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Many of us have found that small changes in our lifestyle can help stabilize or even raise our platelet counts. Here are three things to consider adding to your New Year’s resolutions.
Listen to your body – Take heed when your body is telling you to rest or sit in the sun or go for a walk or take a hot bath. Follow your body’s request if you can and you know that will serve you well. Note: avoid the addictive desires like smoking or consuming alcohol.
Stay away from toxic environments – When you’re on the edge even small changes in the environment can affect your platelets. We suggest you stay away from smoke filled rooms and moldy and musty places. Avoid using harsh cleaning products. Stay away from areas sprayed with pesticides. Stay clear of gasoline or exhaust fumes. Avoid nail polish and hair dyes.
Relax – Reduce the stress in your life as much as you can. Breathe slowly. Walk slowly. Pay attention to circumstances that weigh heavy on your shoulders. Then lift them off.
If you have some platelet friendly lifestyle suggestions you’d like to share with others, just e-mail them to tips@pdsa.org. We’ll choose the best and publish them in later e-newsletters.
For some there is continued concern regarding anthrax exposure. According to the U.S. Department of Health and Human Services (DDHS), one of the options for continued prevention is a course of antibiotics plus 3 doses of anthrax vaccine. See http://www.hhs.gov/news/press/2001pres/20011218.html for the DDHS report.
Note that the anthrax vaccine has not been approved by the FDA. The vaccine package insert contains the following: “Persons receiving cortico-steroid therapy or other agents which would tend to depress the immune system may not be adequately immunized with the dosage schedule recommended.”
The National Vaccine Information Center has a very informative report on anthrax and other vaccines. See: http://www.909shot.com/Anthrax.htm. (The report also contains a history of biological warfare that I found fascinating. ed.)
The ITP abstracts from the American Society of Hematology meeting are now available at http://www.itppeople.com/articles/ashabs2001.htm . They provide a great review of the current state of ITP research. Warning: Have your medical dictionary site handy. There’s one at http://www.medicinenet.com.
Want to read more about the latest in ITP research?
NABI, distributors of WinRho, sponsored a corporate Friday session on December 7, 2001, titled “Third Annual Review of Immune Thromboctopenic Purpura.” Seven top ITP researchers presented their latest findings. Nearly a thousand hematologists attended the session. Now some of this information is available to you.
We have copies of the 30 page booklet that was distributed at the meeting. It contains a synopsis and slides of most of the presentations and some blank pages for notes. Note: This information is not a part of the abstracts mentioned above.
You can see the contents and order a copy of the booklet on-line at http://www.itppeople.com/jcopies.htm or send a check to PDSA, P.O. Box 61533, Potomac, MD 20859. The cost is $6.00 postage and handling if sent to the US or Canada, $9.00 if mailed elsewhere.
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
This e-newsletter is published by the Platelet Disorder Support Association, P.O. Box 61533, Potomac, MD, 20859, phone/fax: 1-87-Platelet or (301) 294-5967, web: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
Contents:
In the last newsletter we mentioned some lifestyle suggestions that some people have found to stabilize or even raise their platelet count. Here are some additional suggestions from our readers.
1) Add more greens to your diet (Amy)
2) Try Reiki. It is total relaxation (Roger)
(Reiki is a type of energy healing. For more information see http://www.reiki.org )
3) I have set up my schedule so that I can take a nap every afternoon if I want. I don't always do it, but it's good to know that I can. (Karen)
4) During the flu season, I wash my hands more frequently than I would otherwise. (Karen)
5) I try to get exercise, but I have sort of a menu of possibilities, depending on how puny I feel on a given day. It's OK to skip it. It's OK to get to the parking lot and then turn around. (Karen)
6) I tend to be way too optimistic about how long something should take. I am working on deliberately over-estimating how much time I might need. (Karen)
If you have some platelet friendly lifestyle suggestions you’d like to share with others, e-mail them to tips@pdsa.org. We’ll choose the best and publish them in later e-newsletters.
The ITP Support Association in the UK reports that one of their members contacted them suggesting that his ITP was associated with exposure to phosphine. Phosphine can be a byproduct of the application of glyphosate, the ingredient in herbicides such as Roundup, Rodeo, Vision, Laso, Clear It, Wrangler, Laredo, Side-Kick, Erase, etc. Glyphosphates work by interfering with the plant enzyme growth process similar to the way antibiotics kill bacteria in humans.
These herbicides are widely used to control undergrowth in forests and on croplands before emergence of barley, wheat, oats, soybeans and corn, for pre-plow cleanup or spot control of perennial weeds in legumes and grasses, and for pasture renovation.
The World Health Organization lists thrombocytopenic purpura in its long list of possible effects following exposure to this phosphine.
If you suspect that your ITP was the result of exposure to phosphine or herbicides, send an e-mail to Shirley@itpsupport.org.uk.
For more information see http://www.rfu.org/ws76.htm.
Did you know that exposure to mercury may accelerate or worsen autoimmune disease? Did you know that some patients with primary immunodeficiency were misdiagnosed as having ITP?
These and many other interesting insights will be presented at the Third International Congress on Autoimmunity being held February 20-24 in Geneva Switzerland. The abstracts are on-line at www.kenes.com/autoim2002.
On Thursday there is a session on “Environmental Triggers of Autoimmune Disease”. On Friday there is a session on “Platelet Immunology and Endothelial Cells.” There are many other sessions and poster sessions. Like other medical abstracts, these can be difficult to understand. However, they are a good way to find the very latest information.
Would you like to write to others who have ITP?
Would you like to know if any other PDSA members live near you?
Our Name Exchange Program is available to members of PDSA. With your permission we will send your name, address, and e-mail to the other members who do the same. Your information will only be given to participating members.
Our next list will be sent the end of January. If you are not a member of PDSA, you can find out more information or join by going to http://www.pdsa.org/joinus.htm.
If you are a member and want to participate in the Name Exchange Program, just send us an e-mail to pdsa@pdsa.org. If you would like your name removed from the list, just send an e-mail. If you are currently on the list and want to continue, there is no need to contact us.
The “Platelet News”, our quarterly newsletters are a great source of information about ITP. Each issue contains from 12 to16 pages of helpful articles, treatment news, and physician input. Now you can get all four 2001 issues of “The Platelet News” for $14.00, postage and handling included.
See http://www.pdsa.org/newsletter.htm for issue contents and to order on-line. You can also order by sending a check to us at P.O. Box 61533, Potomac, MD 20859.
Want to read more about the latest in ITP research?
NABI, distributors of WinRho, sponsored a corporate Friday session on December 7, 2001, titled “Third Annual Review of Immune Thromboctopenic Purpura.” Seven top ITP researchers presented their latest findings. Nearly a thousand hematologists attended the session. Now some of this information is available to you.
We have copies of the 30 page booklet that was distributed at the meeting. It contains a synopsis and slides of most of the presentations and some blank pages for notes. Note: This information is not a part of the abstracts mentioned above.
You can see the contents and order a copy of the booklet on-line at http://www.itppeople.com/jcopies.htm or send a check to PDSA, P.O. Box 61533, Potomac, MD 20859. The cost is $6.00 postage and handling if sent to the US or Canada, $9.00 if mailed elsewhere.
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
This e-newsletter is published by the Platelet Disorder Support Association, P.O. Box 61533, Potomac, MD, 20859, phone/fax: 1-87-Platelet or (301) 294-5967, web: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
Contents:
Here are more platelet friendly tips from our readers:
I have had a platelet disorder since I was nine and every day I take some vitamins, like vitamin C, which makes me feel much better and helps me not to get the flu very easily! (Camila, Brazil)
I have changed my eating. I eat sugarless foods, stay away from white flour items , use whole wheat, use soy items such as soy milk and soy cheese and various dietary supplements approved by my doctor. (George, USA)
After being treated for ITP for 6 months I quit prednisone, still with an average platelet count of 70 - 90, feeling exhausted, depressed and really miserable. Luckily, a work mate of mine suggested the Bodytalk system. After the third and final session, my count reached the 200 mark. I was overjoyed and really feeling well. www.bodytalksystem.com (Alex, Malta)
I take a sesame oil massage daily. I just rub warm sesame oil on my body before my shower. According to ayurvedic medicine, it helps clear toxins from your body. I find that it feels great and solves the winter dry skin problem. You can find out more about the process and buy massage-grade sesame oil at www.mapi.com. (Joan, USA)
If you have some platelet friendly lifestyle suggestions you’d like to share with others, e-mail them to tips@pdsa.org. We’ll choose the best and publish them in later e-newsletters.
We’ve collected all the data from our “Survey of Non-traditional Treatments in ITP” and are beginning to analyze it. There were 916 replies, a much larger sample than usually gathered for ITP research. We thank everyone who participated.
We have a wealth of data and it will take some time to analyze all of it. We plan to place preliminary results on our web site in April. This will be followed by successive updates as we analyze more aspects of the data.
We are finalizing the agenda for our conference. Here are some of the presentations. We think it is a great way to learn more about ITP and meet others the disease.
(This is a preliminary list. Presentations may be added or changed as the conference approaches)
The conference will be held at the San Diego Marriott, Mission Valley, from June 21 –23, 2002. To register, go to http://www.pdsa.org/conference.htm. Be sure to register early to get the registration discount.
“Eradicate H.pylori before treating ITP”. That’s the headline from the January 2002 issue of “Hem/Onc Today” and it is very good news for us.
The article discusses data from two Japanese studies presented at the 2001 American Society of Hematology meeting suggesting that eradicating Helicobacter pylori, a bacteria that is also associated with ulcers, can be a good treatment for ITP. In one study 12 of 19 patients had significant increase in platelet counts. In another study 6 of 14 had a good or complete response.
The connection between H.pylori and ITP was first reported in a study by Emilia, et al. at last year’s ASH conference, in the journal “Blood”, vol. 97, and in the Winter, 2001 edition of PDSA’s “The Platelet News”. Since then other researchers in the US and other countries have conducted studies to replicate the results. While not all researchers have found the success reported in these Japanese studies, H.pylori testing is becoming more widely used and accepted when diagnosing and treating ITP.
For more information see the ASH meeting abstracts at http://www.itppeople.com/abstracts.htm. To order your copy of The Platelet News – Winter 2001, go to http://www.pdsa.org/newsletter.htm.
According to an article in the January 22, 2002, New York Times, inflammation plays a more significant role in diseases than previously reported. Scientists report severe blockages cause at most three out of ten heart attacks. The remainder may be triggered by inflammation.
Inflammation is linked to diseases associated with aging such as atherosclerosis, diabetes, Alzheimer’s disease and osteoporosis. It is implicated in asthma, cirrhosis of the liver, some bowel disorders, psoriasis, meningitis, cystic fibrosis, and cancer. Inflammation is also the cause of crippling joints in rheumatoid arthritis and nerve cell destruction in multiple sclerosis (autoimmune diseases like ITP).
Scientists can measure C-reactive protein C.R.P, a marker of inflammatory activity. Two studies have demonstrated that the higher a person’s C-reactive protein level, the greater the risk of heart attack or stroke. Diet, exercise, and smoking cessation can lower C.R.P. levels.
It is important to find the source of inflammation. In asthma, the inflammation is caused by allergens like dust mites or cat dander. In atherosclerosis, inflammation may be caused by oxidized fat droplets. Some experts speculate that infections caused by H.pylori, Herpes Simplex, cytomegalovirus and other infections agents may play an indirect role and heighten the body’s inflammatory response.
(Note that prednisone, widely prescribed for ITP, is an anti-inflammatory drug)
For more information see on the NY Times aricle see: http://www.nytimes.com/2002/01/22/health/anatomy/22INFL.html
(Thanks to John for sending this information)
The Winter 2001 edition of “The Platelet News” contains an article entitled “Splenectomy and Heart Attacks – An Interesting Link”. The Spring 2001 edition of “The Platelet News” contains an article entitled “Infections and ITP.” Go to http://www.pdsa.org/newsletter.htm to order back issues of “The Platelet News.”
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
This e-newsletter is published by the Platelet Disorder Support Association, P.O. Box 61533, Potomac, MD, 20859, phone/fax: 1-87-Platelet or (301) 294-5967, web: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
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If you have any choice on the bon-bons that may be coming your way on Thursday, here’s our recommendation: good quality dark chocolate.
In the February issue of his Self Healing newsletter Dr. Andrew Weil reports, “Good quality dark chocolate has relatively little sugar, is richer in protective antioxidants, and is made with cocoa butter, not unhealthy fats such as palm or coconut oils.…Chocolate is not just a food, it is a drug. It contains small amounts of caffeine but more of another stimulant called theobromine…which can boost serotonin and endorphin levels in the brain that improve mood and enhance pleasure…”
His advice: 1) Stick to plain dark chocolate (sugar is not listed first in the ingredients list), 2) Treat yourself occasionally 3) Notice the effects.
We agree.
Have a Happy Valentine’s Day!
In the last e-news we reported the topics that will be presented at our ITP Conference 2002. Here are some additions. The complete topic list and the speaker bios are now on our web site at http://www.pdsa.org/conference.htm.
“Oxidative Stress and ITP: Implications for a Less Aggressive Therapy.” - Enrique González Vergara
Enrique González Vergara, PhD, graduated from the University of California San Diego USA, then went back to his native country México to be a professor at the Benemérita Universidad Autónoma de Puebla in Puebla México. He is currently active in research and teaching. He has researched and published extensively on many topics involving inflammation and oxidative stress. In 1999 he presented a paper “Ascorbic Acid, Oxidative Stress and an Alternative Therapy for ITP” at the International Symposium for Oxidative Stress in Kyoto, Japan. His wife has had ITP for 25 years. They both have three healthy children, and now she is doing well.
"The Patients Speak: Results from the Survey of Non-Traditional Treatments in ITP” – Joan Young
Joan Young is the founder and president of the Platelet Disorder Support Association. She was diagnosed with ITP in 1992 at the age of 46. After seven treatments failed to provide a sustained safe count, she turned to complementary medicine. Her platelets have been over 200,000 for 6 years. She attributes her good health to herbs, diet, energy treatments and many other small and large lifestyle changes.
Be sure to register for our conference by March 31 to receive the$10.00 registration discount. You can register on-line at http://www.pdsa.org/confregon.htm or by sending a check to us at P.O. Box 61533, Potomac, MD 20859. The cost is $75 for non-members and $65 for members. For membership information go to http://www.pdsa.org/joinus.htm
Many drugs adversely affect your cholesterol lipid levels (triglyceride, HDL, LDL). A long list in in Drug and Ther Perspect 17(23):11-15, 2001. For people with ITP, the most relevant drugs on the list are Danazol, prednisone and other immunosuppressive drugs.
Danazol
“Danazol, which is primarily used for the treatment of endometriosis, increases LDL-cholesterol levels by up to 40% and decreases HDL-cholesterol levels by approximately 50%. These effects are not dose dependent and serum lipids rapidly return to baseline levels, usually within 8 weeks of stopping therapy.[1] “ Danazol: raises LDL 10-40%, lowers HDL 50%, no change in total cholesterol or triglycerides
Immunosuppressants
“After successful transplantation surgery, patients show high cardiovascular morbidity and mortality because of the accumulation of risk factors such as hypertension and hyperlipidaemia. This hyperlipidaemia may be induced by immunosuppressive therapy following transplantation, as all lipid levels are increased. The magnitude of these effects depends on the combination of immunosuppressants and the gender of the patient; the effects seem to be larger in women than in men.[1] Combinations with cyclosporin tend to have the greatest effects; however, low-dose cyclosporin (1.25 mg/kg) as used in the treatment of psoriasis does not significantly affect the lipid profile.[1]
In contrast, combinations with prednisolone (i.e. azathioprine plus prednisone) are associated with the smallest increases.[1] Tacrolimus does not affect total or LDL-cholesterol levels and shows a smaller effect than cyclosporin on triglyceride levels (10 to 15% increase); the effects on HDL-cholesterol levels are similar to cyclosporin. Mycophenolate mofetil, one of the newer immunosuppressive agents, does not adversely affect the lipid profile. However, sirolimus (rapamycin) seems to have an even more pronounced effect on both cholesterol and triglyceride levels than does cyclosporine.”
Immunosuppressive Drugs: raise total cholesterol 10-40%, raise LDL 0-50%, raise HDL, 0-90%, raise triglycerides 0-70%.
.[1] Mantel-Teeuwisse AK, Kloosterman JME, Maitland-van der Zee, AH, et al. Drug-induced lipid changes: a review of the unintended effects of some commonly used drugs on serum lipid levels. Drug Saf 2001, 24: 443-56
We found that the Fall issue of the newsletter mailed September 9, was not received by many of our members and those who received their newsletter found their copies yellow, brittle, or smudged. Our best guess is that they were over-cooked in Post Office’s attempt to keep our mail safe. We’ve notified the Post Office and will look into sending our newsletters by a speedier method.
In the meantime, if you are a member and would like another copy of the Fall newsletter, just send us an e-mail and we’ll send one to you.
Here are more platelet friendly tips from our readers:
“My daughter, Camila, has had ITP for almost a year (she is two years old now). We have found that by including as much fish as possible into her regular diet, her platelet counts have stabilized for months.”
(Alexandra, Miami).
“I've had ITP for over 20 years and find that the fresh juice extracted from a pineapple taken each day for a period of 1-2 weeks increases my platelet count tenfold. Yes - I do mean tenfold!! On two occasions in the past year, my count has gone from 10 to 120+ (which for me is good) in the space of only one week.
“I originally found out about the pineapple juice by reading a letter in a medical journal from a pharmacist whose wife had ITP and who had been told about this treatment whilst on holiday in Africa. She subsequently tried it, and it worked for her so I thought there was no harm in trying it myself. This simple remedy has kept my levels relatively stable for over 18 years. I am not sure if it works as well with packaged juice as I've always made a point of making an extract from the fresh fruit - or actually just eating a pineapple a day.”
(Emine, London)
If you have some platelet friendly lifestyle suggestions you’d like to share with others, e-mail them to tips@pdsa.org. We’ll choose the best and publish them in later e-newsletters.
IgG America is a national specialty pharmacy organization that provides immune globulin services in the home setting. IgG America can arrange services during the day, evening, and/or weekend. Not only is it more convenient then having infusions in a physician’s office or outpatient center, it is usually less expensive. Services provided include immune globulin, supplies, pump/IV pole, and nursing services required to administer the immune globulin. The nurse stays the entire duration of the treatment and follows a comprehensive administration protocol. If you would like more information on IgG America’s services or would like to inquire if your health insurance would cover home immune globulin treatments, please call (toll free) 1-877-674-9700 or visit our website at www.iggamerica.com.
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
This e-newsletter is published by the Platelet Disorder Support Association, P.O. Box 61533, Potomac, MD, 20859, phone/fax: 1-87-Platelet or (301) 294-5967, web: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
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The schedule for our ITP Conference 2002 is set. The topics are listed below.
You can see the schedule detail, speaker biographies and other conference information at http://www.pdsa.org/conference.htm. The conference will be held at the San Diego Marriott Mission Valley in San Diego, CA, from June 21 – 23. 2002. Be sure to register before March 31 to receive your registration discount.
Friday, June 21, 2002
Saturday, June 22, 2002
Sunday, June 23, 2002
Did you know that we absorb 60 percent of the substances we put on our skin? That means the make-up, deodorant, hair dye, and lotion we put on our bodies all reach our blood stream. Unfortunately, these products can contain substances that can harm or aggravate our immune systems. The Fair Packaging and Labeling Act requires that the product ingredients are listed on the packaging in descending order of quantity. Here are a few ingredients to avoid:
Diethanolamine (DEA) /Triethanolamine (TEA): Found in commercial shampoos as a wetting agent. Combines with nitrosamines, potent carcinogens.
Imidazolidinyl Urea; 2-bromo-2-nitropopane-1; 3-diol; diazolidinyl urea; DMDM hydantoin; Quaternium-15: Synthetic preservatives that can release formaldehyde into products. Formaldyhyde can damage your DNA.
Mineral oil and propylene glycol: Petroleum derivatives that can cause allergic reactions
Others to avoid: methyl and propyl paraben (p-hydorxybenzoate or PHB); lanolin; talc; silica; sodium PCA (NAPCA); synthetic hair dyes; synthetic fragrances PVP-VA/copolymers
(Information taken from “Kinder, Gentler Body Care” Co-op America’s Real Money Newsletter, January/February 2002)
Congress has approved the 2002 National Institutes of Health (NIH) budget of $22.89 billion dollars, a 13.9 percent increase over last year. The budget includes $2.58 billion for the National Heart, Lung, and Blood Institute (NHLBI), a 12.1 percent increase over last year.
The American Society of Hematology worked with the appropriations committee to include language in the final report that promotes and furthers interest in hematology. Of special interest to those with ITP is “the establishment of a clinical research network, which will enable patients with non-malignant blood disorders to participate in high-quality clinical network protocols while at the same time attracting and training clinicians in hematology.” The targeted non-malignant blood disorders include ITP.
PDSA is following the progress of the clinical trials network and will report the milestones to our readers. We will have more information on this network in our upcoming winter newsletter.
We are finalizing the Winter edition of our newsletter, “The Platelet News”. This issue will be our largest edition to date at 20 pages. It will go to the printer March 4 and be sent flat instead of folded like our previous issues. We hope this expedites delivery and avoids the problems we experienced with our Fall issue.
It will contain the following articles:
“Hepatitis C infection related thrombocytopenia might masquerade as ITP” by Sandeep Rajan, MD
“Medicines, Foods, and Herbal Remedies That Can Cause a Low Platelet Count” by James N. George, MD and George R. Buchanan, MD
Plus an update on the latest treatment information from the December 2001 American Society of Hematology meeting, abstracts and other facts on the effects of mercury on autoimmune diseases, news from the NIH, answers to patient questions, and much more.
The Platelet News is mailed quarterly to our members. If you are not a member and would like to receive our newsletter, you can join on-line at http://www.pdsa.org/joinus.htm or send a check for $25 or more to PDSA, P.O. Box 61533, Potomac, MD 20859.
Errata: In our last e-news we erroneously stated that our Fall newsletter was mailed on September 9. The Fall newsletter was mailed on December 1.
IgG America is a national specialty pharmacy organization that provides immune globulin services in the home setting. IgG America can arrange services during the day, evening, and/or weekend. Not only is it more convenient then having infusions in a physician’s office or outpatient center, it is usually less expensive. Services provided include immune globulin, supplies, pump/IV pole, and nursing services required to administer the immune globulin. The nurse stays the entire duration of the treatment and follows a comprehensive administration protocol. If you would like more information on IgG America’s services or would like to inquire if your health insurance would cover home immune globulin treatments, please call (toll free) 1-877-674-9700 or visit our website at www.iggamerica.com.
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
This e-newsletter is published by the Platelet Disorder Support Association, P.O. Box 61533, Potomac, MD, 20859, phone/fax: 1-87-Platelet or (301) 294-5967, web: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
Contents:
Many people think ‘green’ as St. Patrick’s Day nears. In addition to contemplating a sip of green beer or slipping on those green socks, we suggest you drink some green tea.
Green tea has a higher concentration of polyphenols than black tea. Some studies suggest polyphenols are powerful antioxidants that can protect you from some cancers and tooth decay, among other health benefits. Green tea has less caffeine than black tea and contains l-theanine, an amino acid that may moderate the caffeine to produce a state of alert relaxation. For more information see www.tenren.com.
We are fortunate to have so many people searching for ITP information. On Feb. 24 Maura posted a note to the discussion group mentioning articles in “Environmental Health Perspectives, vol. 107, suppl.5, Oct. 1999. We took advantage of our location near the NIH to visit the National Library of Medicine and find the articles.
The supplement contains over 100 pages describing research reported at the “Workshop on Linking Environmental Agents and Autoimmune Diseases” sponsored by the National Institute of Environmental Health held September 1-3, 1998 in North Carolina.
While there were no articles specific to ITP, there were many facts that could be helpful to us. Specifically, one article mentions mercury, iodine, vinyl chloride, canavanine, organic solvents, silica, l-tryptophan, particulates, ultraviolet radiation and ozone in association with autoimmune diseases.
You can read the abstracts at http://ehpnet1.niehs.nih.gov/docs/1999/suppl-5/toc.html. If your local library or medical school has a subscription to the journal you can read the full text articles on-line. We copied four of the articles and will summarize the most relevant points for our upcoming newsletters.
IN THE UK
The ITP Support Association in the UK will hold their ITP convention on Saturday, April 6 at Hinchingbrooke House, Huntingdon, Cambridgeshire, UK. The convention will feature various talks from noted ITP physicians from the US and UK. For more information go to http://www.itpsupport.org.uk or write to Shirley@itpsupport.org.uk.
Representatives from PDSA are planning to attend and will report on any interesting news from that conference.
IN SAN DIEGO, CA
We are pleased to announce that The DAISY Foundation, Nabi, and Amgen have pledged their support for our ITP Conference 2002 scheduled June 21-23 in San Diego, CA. We reply on our corporate and foundation sponsors to keep the conference affordable and are very grateful for their assistance.
We expect to add more conference sponsors as the conference date approaches.
For more information on our conference and to register, see http://www.pdsa.org/conference.htm.
Our winter newsletter will be mailed on Wednesday, March 13. This newsletter is 20 pages, our largest ever. This edition of our newsletter will be mailed flat directly from our printer. We hope this helps it arrive in your mailbox in good condition. Keep us informed.
Our newsletter is sent to our members. To become a member, go to http://www.pdsa.org/joinus.htm.
The winter edition will be mailed to all current members and those who become members before March 21. If you’re not a member, consider joining today. PDSA relies on member contributions to fund our programs. We appreciate your support.
If you have chronic ITP, you have treatment options other than splenectomy.
WinRho SDF®, Rho (D) Immune Globulin Intravenous (Human), is a medication specifically designed to treat ITP that may help you maintain platelet levels. Clinical studies have shown that many people respond well to WinRho SDF®—including one study that followed participants for over 2 years!1,2 Continuing therapy allowed patients more time for response and gave them time to improve on their own.2
WinRho SDF® has not been associated with some of the troublesome side effects sometimes encountered with long-term corticosteroid treatment. Compared with other IV therapies, it’s more convenient—the complete injection time is only 3 to 5 minutes approximately once a month.
Talk with your doctor to find out more about maintenance therapy and whether WinRho SDF® is right for you.
References:
1. Bussel JB, Graziano JN, Kimberly RP, Pahwa S, Aledort LM. Intravenous anti-D treatment of immune thrombocytopenic purpura: analysis of efficacy, toxicity, and mechanism of effect. Blood. 1991;77:1884-1893.
2. Cooper N, Woloski BMR, Fodero EM, et al. Does treatment with intermittent infusions of intravenous anti-D allow a proportion of adults with recently diagnosed immune thrombocytopenic purpura to avoid splenectomy? Blood. 2002;99:1922-1927.
Please go to www.nabi.com/products/WinRhoCurrent.pdf
WinRho SDF® is prepared from human plasma, and the potential to transmit infectious agents and theoretically, the Creutzfeldt-Jakob (CJD) agent cannot be totally eliminated. WinRho SDF® should not be given to persons who have had an anaphylactic or severe systemic reaction to human globulin, who are Rh-negative, or who have been splenectomized. WinRho SDF® may cause anaphylactic reactions in individuals who are deficient in IgA. Due to the presumed mechanism of action of WinRho SDF®, a decrease in hemoglobin is an expected adverse event. WinRho SDF® should therefore be used with caution in patients with hemoglobin <8 g/dL. Following administration of WinRho SDF®, Rho(D)-positive ITP patients should be monitored for signs and/or symptoms of intravascular hemolysis (IVH), clinically compromising anemia, and renal insufficiency. IVH-related complications that have been reported are death (four cases reported between May 1996 and April 1999), acute onset or exacerbation of anemia, acute onset or exacerbation of renal insufficiency and requirement for transfusion following WinRho SDF® administration. Infusion-related adverse events such as headache, chills, and fever may also occur.
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
This e-newsletter is published by the Platelet Disorder Support Association, P.O. Box 61533, Potomac, MD, 20859, phone/fax: 1-87-Platelet or (301) 294-5967, web: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
Contents:
Spring is a great time to clean out the toxins your body has accumulated during the winter. According to Ayurvedic medicine, a long-standing system of medicine from India, toxins, called ama, accumulate in your body from incomplete digestion and exposure to environmental toxins such as pesticides and household chemicals. If you wake up in the morning and your tongue is coated, if you feel dull and sleepy after eating, if your mind is foggy, or if you have a heavy feeling in your body you may have a build-up of toxins. These toxins can manifest in a variety of symptoms such as fatigue, joint pain, frequent colds, and other ailments.
There are many ways to rid your body of ama. One way is to eat an ama-reducing diet of warm, freshly-cooked whole foods. Cooked leafy greens such as kale and chard are very good at helping the body detoxify.
The information in this article was taken from “Taking Care of Toxins” in the February 2002 special edition of the “Total Health News”. You can view the entire article on-line at http://www.mapi.com
We scan each issue of the journal “blood” for platelet articles that might interest our readers. In the March 15 issue there were three…a record. You can read the text of the abstracts free or purchase the articles at http://www.bloodjournal.org/. Just enter the volume number and beginning page into the search boxes.
Using Anti-D to avoid Splenectomy
Twenty-eight non-splenectomized ITP patients were given repeated doses of Anti-D (WinRho) to determine if the treatment could help these patients sufficiently stabilize their counts and avoid splenectomy. The authors concluded that Anti-D was an effective maintenance treatment for two-thirds of the patients who failed an initial course of steroids and allowed 40% of the adults avoid splenectomy and achieve stable platelet counts off all therapy. Vol. 99 p. 1922.
Vitamin A and Thrombocytopenia
An infant, given 62,000 IU/day of vitamin A, 41 times the recommended daily allowance in the first year of life, developed severe anemia and thrombocytopenia. When the vitamin A was interrupted the infant recovered. The authors investigated the interaction between the high dose of vitamin A and bone marrow and concluded that the resultant anemia and thrombocytopenia were due to the direct effect of the molecule on the bone marrow components. Vol. 99 p. 2017.
Abciximab and Thrombocytopenia
Abciximab, a monoclonal antibody often given to heart patients to prevent blood clots, causes thrombocytopenia in 1% - 2% of the patients. The authors found that the patients who developed thrombocytopenia had existing antibodies that made them more susceptible. They concluded that it may be possible to identify patients who were at risk by screening for antibodies that recognize 7E3-coated platelets. Vol. 00 p. 2054.
Thinking about coming to our ITP conference in San Diego, June 21-23, 2002?
We found great discount airline tickets at www.orbitz.com. Other travel sites are www.trip.com, www.travelocity.com and www.expedia.com. Or try southwest airlines www.southwest.com, known for their low rates.
You can get discount tickets to some of San Diego’s finest attractions at
http://www.a-zsandiegoattractions.com/.
Here’s what others are saying about this great city.
"One of the top 10 cities in the United States" - Conde Nast Traveler Magazine
"One of the top 12 places to vacation in North America" - Money Magazine
"The most family-friendly city in the southwest U.S." - Family Fun Magazine
"The Newest Cultural Mecca in the United States" - travelocity.com
For more information on our conference and to register go to http://www.pdsa.org/conference.htm. Register before April 15 and save $10.
Parsley is considered by many to be good for the liver, an organ sometimes implicated in ITP. I juice two bunches of parsley at a time and drink a mug of juice a day. Sometimes I mix it with other fruits or vegetables. Peter (PA)
Remember to add something fun to do every day. Practice being creative every day. Amy (NJ)
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
This e-newsletter is published by the Platelet Disorder Support Association, P.O. Box 61533, Potomac, MD, 20859, phone/fax: 1-87-Platelet or (301) 294-5967, web: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
Contents:
The March 28, 2002 edition of the New England Journal of Medicine contains a 21 page review article on ITP by Douglas Cines, M.D. and Victor Blanchette, M.B., B.Chir. It includes sections on physiology, genetics, measuring platelet antibodies, initial and subsequent disease management, splenectomy, approaches to chronic cases, ITP and pregnancy, and other topics.
Our favorite quote is in “The Patient’s Perspective” section: ”The Internet has become both a source of quixotic remedies and an important resource enabling patients to find expert care and to receive support from other patients.”
We have ordered 100 copies of the article and will make them available for $5.00 shipping and handling as soon as we receive them. We thank Dr. Cines and the University of Pennsylvania for helping us with this.
You can download the ITP review article for $10 at www.nejm.org.
The American Autoimmune Related Diseases Association, Inc. (AARDA) is leading an initiative to secure additional NIH funding for autoimmune diseases. This includes ITP. In 2001, congress passed legislation requesting that the NIH produce a national strategic plan for autoimmune research. According to NIH estimates the plan will require funding of $400 million in addition to the $456 million already allocated to autoimmune research.
AARDA is organizing a major lobbying effort to help assure this additional research money becomes available. PDSA is a member of the National Coalition of Autoimmune Patient Groups participating in the lobbying effort.
You can help, too, by writing or talking to your legislators. Visit AARDA’s web site at http://www.aarda.org for more information.
The alternative health panel, commissioned by President Bill Clinton two years ago and composed of 20 members from various medical disciplines, finalized its report in mid March. The verdict: “spend more money on research into complementary and alternative medicine (CAM), better educate and regulate practitioners of these therapies, publicize the risks of certain CAM treatments and expand insurance coverage to make CAM affordable to more Americans.”
CAM continues to be controversial and two of the panel’s members issued dissenting reports.
Washington Post, March 19, 2002.
Note: Dr. Stephen Groft, the executive director of the panel, is on leave from his post as the director of the Office of Rare Diseases at the NIH. He is familiar with ITP and some of our CAM success stories.
The FDA issued a voluntary recall of two lots of Bayer Corporation’s IVIg product, Gamimune, due to a discovery of product tampering. Bayer initiated a voluntary recall of lots 648X078, recalled February 1 and lot 648X062, recalled March 14, 2002. Bayer indicated that the tampering problem is limited to those recalled lots.
Note that there is no cause for alarm with using IVIg in general and that Bayer is doing everything it can to assure the quality of its product.
For more information go to http://www.fda.gov/cber/infosheets/bayigiv032002.htm
Additional Fax Number – We found that some people were having trouble reaching us by fax. We have an additional fax number, (301) 294-3125. We will continue to receive faxes at 1-87-PLATELET, (301) 294-5967.
UK Conference – Joan and Buzz attended the ITP Support Association’s Conference in the UK on April 6. It was a great experience to meet Shirley Watson, their founder and chief administrator, talk to some of our UK members, and learn about the similarities and differences in treatment philosophies between the UK and the US. We’ll publish a report in our next regular newsletter.
ITP Conference in San Diego – Ron Strom, one of our volunteers, created a great conference poster for our upcoming ITP Conference in San Diego. We plan to distribute these to hospitals and large hematology practices in Southern California and other areas. If you live near a hospital or are a patient at a large hematology practice and would like to help us by distributing a poster, just reply to this e-mail with your name and mailing address or the name and address of the hospital or medical practice and we’ll send a poster.
The ITP Conference 2002 will be held June 21-23 at the San Diego Marriott Mission Valley, San Diego, CA. For more information and to register go to http:www.pdsa.org/conference.htm.
If you have chronic ITP, you may be receiving IVIG that may require 4 to 6 hours administer.
There is an alternative treatment with more convenient dosing. WinRho SDF®, Rho (D) Immune Globulin Intravenous (Human), is a medication specifically designed to treat ITP that may help you maintain platelet levels. With WinRho SDF®, your treatment would take only 3 to 5 minutes per injection. That could give you more time to get out and enjoy the things you love doing.
Talk with your doctor to find out if WinRho SDF® is right for you.
Please go to www.nabi.com/products/WinRhoCurrent.pdf for prescribing information for WinRho SDF®.
WinRho SDF® is prepared from human plasma, and the potential to transmit infectious agents and theoretically, the Creutzfeldt-Jakob (CJD) agent cannot be totally eliminated. WinRho SDF® should not be given to persons who have had an anaphylactic or severe systemic reaction to human globulin, who are Rh-negative, or who have been splenectomized. WinRho SDF® may cause anaphylactic reactions in individuals who are deficient in IgA. Due to the presumed mechanism of action of WinRho SDF®, a decrease in hemoglobin is an expected adverse event. WinRho SDF® should therefore be used with caution in patients with hemoglobin <8 g/dL. Following administration of WinRho SDF®, Rho(D)-positive ITP patients should be monitored for signs and/or symptoms of intravascular hemolysis (IVH), clinically compromising anemia, and renal insufficiency. IVH-related complications that have been reported are death (four cases reported between May 1996 and April 1999), acute onset or exacerbation of anemia, acute onset or exacerbation of renal insufficiency and requirement for transfusion following WinRho SDF® administration. Infusion-related adverse events such as headache, chills, and fever may also occur.
IgG America is a national specialty pharmacy organization that provides immune globulin/WinRho SDF services in the home setting. IgG America can arrange services during the day, evening, and/or weekend. Not only is it more convenient then having infusions in a physician’s office or outpatient center, it is usually less expensive. Services provided include immune globulin, supplies, pump/IV pole, and nursing services required to administer the immune globulin. The nurse stays the entire duration of the treatment and follows a comprehensive administration protocol. If you would like more information on IgG America’s services or would like to inquire if your health insurance would cover home immune globulin treatments, please call (toll free) 1-877-674-9700 or visit our website at www.iggamerica.com.
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
This e-newsletter is published by the Platelet Disorder Support Association, P.O. Box 61533, Potomac, MD, 20859, phone/fax: 1-87-Platelet or (301) 294-5967, web: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
Contents:
From our e-mails and survey responses we know that many of our readers find a spiritual connection helpful in addressing their ITP. The Center for the Study of Religion/Spirituality and Health - Duke University (http://garcia.geri.duke.edu/religion) has published a new web site that illustrates research on the subject.
Other spirituality web sites include:
The George Washington Institute for Spirituality and Health - George Washington University
http://www.gwish.org
IDEC Pharmaceutical Company plans to submit an Investigational New Drug application (IND) to the Food and Drug Administration (FDA) for Rituxan as a treatment for ITP. An IND is a request for authorization from the FDA to administer an investigational drug or biological product to humans. Rituxan was the first monoclonal antibody approved for the treatment of non-Hodgkin's lymphoma. There have been several small clinical trials where Rituxan has demonstrated a potential for helping patients with ITP. With the approval of an IND for ITP, IDEC and their partner Genentech can conduct a large Phase 3 clinical trial for ITP patients.
Related sites:
RepliGen, a Massachusetts company, has initiated a phase 1/2 open label, dose escalating clinical trial to evaluate the safety and efficacy of CTLA4-Ig in patients with refractory ITP in the United Kingdom. CTLA4-Ig is a genetically engineered human antibody that temporarily disables T-cells. RepliGen chose ITP for its clinical trail because the treatment's efficacy is easily measured by a platelet count. The clinical trial is being conducted by Dr. Drew Proven at the Royal London Hospital.
For more information see;
http://www.repligen.com/Research/CTLA4/HomePage.html
We're looking for an ITP parent and ITP teen to round out the people for our patient panel for our ITP Conference 2002. If you have an interesting story you feel would help others, e-mail a synopsis to pdsa@pdsa.org. The patient panel is scheduled for Sunday morning, June 23, 2002. Patient panel members receive a complementary conference registration. (If you've already registered, we'll send a refund)
Our ITP Conference 2002 will be held June 21 - 23, 2002 in San Diego, CA. For more information go to http://www.pdsa.org/conference.htm.
We are pleased to announce that the United Way of the National Capital Area has approved our application. Our United Way/Combined Federal Campaign number is 9236. PDSA relies on donations to continue and expand our work. We value your contributions. Please consider designating PDSA if you donate through these organizations.
If you are not in the area serviced by the United Way of the National Capital Area you can still designate PDSA as a recipient of your funds. Just place our organization's name and address in the designated spot. The United Way will then contact us for our non-profit information. We've received United Way contributions from the United Way Capital Area (Austin, TX), the United Way Treasure Valley (Boise, ID), and the United Way California Capital Area (Sacramento, CA).
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
This e-newsletter is published by the Platelet Disorder Support Association, P.O. Box 61533, Potomac, MD, 20859, phone/fax: 1-87-Platelet or (301) 294-5967, web: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
Contents:
There's only one week left to take advantage of the $109.00 per night special room rate at our conference hotel, the San Diego Marriott Mission Valley. To book your room call the Marriott reservation lines at 800-228-9290 or 800-842-5329.
We will accept conference reservations until June 18. If you've decided to attend, please register ASAP to help us avoid a last minute administrative crunch.
For more conference information and to register go to http://www.pdsa.org/conference.htm.
Just added - the conference abstracts at http://www.pdsa.org/confabs2002.htm
Now in stock at PDSA.
The March 2002 issue of "Blood Reviews" contains 80 pages of ITP information. The sections include Pathophysiology (5 articles), Clinical management of pediatric ITP (4 articles), Clinical management of adult ITP prior to Splenectomy, (5 articles), Clinical management of adult ITP after splenectomy, (4 articles), Other immune thrombocytopenias (3 articles including "Alloimmune thrombocytopenia of the fetus and the newborn") For a complete list of the articles see: http://www.itppeople.com/blrevlist.htm
The cost is $7.00 shipping and handling to the US and Canada, $10.00 elsewhere. To order, go to http://www.itppeople.com/jcopies.htm or send a check to PDSA, P.O. Box 61533, Potomac, MD 20859.
The journal copies were donated by Nabi. We appreciate Nabi's continued support in assisting our education program.
Senator Barbara Boxer (D-CA) introduced a bill to increase research on autoimmune diseases in women.
Autoimmune diseases are the fourth largest cause of disability among women in the United States. There are more than 80 illnesses classified as autoimmune diseases, including ITP.
The Women's Autoimmune Diseases Research and Prevention Act, S. 2234, would direct the Department of Health and Human Services' Office on Women's Health to support and coordinate research and develop methods to prevent these diseases in women. ITP is three times more prevalent in adult women than men.
For more information go to: http://boxer.senate.gov/newsroom/200204/20020425_health.html
Danazol may increase the risk of ovarian cancer according to a study done at the University of Pittsburgh Graduate School of Public Health and presented at the 33rd Annual Meeting of the Society of Gynecologic Oncologists. The risk increased with longer duration of Danazol use. Women who used Danazol for 4 or more months were 4 times more likely to develop ovarian cancer than those who never used Danazol.
Danazol is frequently used to treat endometriosis and occasionally used to treat ITP.
For more information see www.hemonctoday.com and http://www.itppeople.com/danazol.htm
Breath testing for H.pylori was as effective as endoscopy according to results of a trial published in the April issue of the British Medical Journal. The breath test is more comfortable and substantially less expensive than endoscopy. H.pylori is a bacteria linked to stomach ulcers and recently to thrombocytopenia.
Researchers at the December, 2001, American Society of Hematology meeting recommended that all patients with ITP be tested for H.pylori since low platelets can be associated with an H.pylori infection and treating the H.pylori has raised the platelet count in some patients.
For more information see:
If you have chronic ITP, splenectomy (surgical removal of the spleen) is not your only option. While this procedure may work well for many people initially, as many as 40% of adults do not respond to splenectomy or relapse following the procedure.1 If splenectomy fails to achieve remission, treatment options for ITP may be limited. Additionally, splenectomized people are at an increased lifelong risk of serious infection.2
WinRho SDF®, Rho (D) Immune Globulin Intravenous (Human) is a medication specifically designed to treat ITP that may help you maintain platelet levels. Therapy with WinRho SDF® is less invasive than splenectomy, and clinical studies have shown that many people respond well to WinRho SDF®—including one study that followed participants for over 2 years!3,4 The investigators concluded that continuing therapy may allow patients more time for response and may give them time to improve on their own.4
Talk with your doctor to find out about options other than splenectomy and whether WinRho SDF® is right for you.
1. Cines DB, Blanchette VS. Immune thrombocytopenic purpura. N Engl J Med. 2002;346:995-1008.
2. Waghorn DJ. Overwhelming infection in asplenic patients: current best practice preventive measures are not being followed. J Clin Pathol. 2001;54:214-218.
3. Bussel JB, Graziano JN, Kimberly RP, Pahwa S, Aledort LM. Intravenous anti-D treatment of immune thrombocytopenic purpura: analysis of efficacy, toxicity, and mechanism of effect. Blood. 1991;77:1884-1893.
4. Cooper N, Woloski BMR, Fodero EM, et al. Does treatment with intermittent infusions of intravenous anti-D allow a proportion of adults with recently diagnosed immune thrombocytopenic purpura to avoid splenectomy? Blood. 2002;99:1922-1927.
Please go to www.nabi.com/products/WinRhoCurrent.pdf for prescribing information for WinRho SDF®.
WinRho SDF® is prepared from human plasma, and the potential to transmit infectious agents and theoretically, the Creutzfeldt-Jakob (CJD) agent cannot be totally eliminated. WinRho SDF® should not be given to persons who have had an anaphylactic or severe systemic reaction to human globulin, who are Rh-negative, or who have been splenectomized. WinRho SDF® may cause anaphylactic reactions in individuals who are deficient in IgA. Due to the presumed mechanism of action of WinRho SDF®, a decrease in hemoglobin is an expected adverse event. WinRho SDF® should therefore be used with caution in patients with hemoglobin <8 g/dL. Following administration of WinRho SDF®, Rho(D)-positive ITP patients should be monitored for signs and/or symptoms of intravascular hemolysis (IVH), clinically compromising anemia, and renal insufficiency. IVH-related complications that have been reported are death (four cases reported between May 1996 and April 1999), acute onset or exacerbation of anemia, acute onset or exacerbation of renal insufficiency and requirement for transfusion following WinRho SDF® administration. Infusion-related adverse events such as headache, chills, and fever may also occur.
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
This e-newsletter is published by the Platelet Disorder Support Association, P.O. Box 61533, Potomac, MD, 20859, phone/fax: 1-87-Platelet or (301) 294-5967, web: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
Contents:
This is the first ITP Conference where researchers in traditional treatments will have a chance to present and discuss their views with researchers in non-traditional treatments. We look forward to the synergy that can develop from sharing divergent opinions.
Abstracts:
Read all about it…the ITP Conference 2002 abstracts are on the web site at http://www.pdsa.org/confabs2002.htm. These are short synopsis of the talks that will be given at our conference on June 21-23 in San Diego, CA.
Room Discount Extension:
Marriott has agreed to extend the $109.00 room rate depending on room availability. Call Marriott reservations at 800-228-9290 or 800-842-5329 soon to take advantage of this discount rate. If you have problems getting the discount rate call us at 1-87-Platlet (1-877-528-3538).
Registration Deadline:
If you are planning to come to the conference, please register by June 17, 2002. We need a final count by close of business on that day.
Additional Conference Sponsor:
We welcome Genentech/IDEC as a conference sponsor. Other conference sponsors include the DAISY Foundation and Nabi. We rely on our sponsors to help make our ITP conference possible. We appreciate their support.
For more conference information and to register, go to http://www.pdsa.org/conference.htm.
The March 28, 2002 edition of the New England Journal of Medicine contains a 21 page review article on ITP by Douglas Cines, M.D. and Victor Blanchette, M.B., B.Chir. It includes sections on physiology, genetics, measuring platelet antibodies, initial and subsequent disease management, splenectomy, approaches to chronic cases, ITP and pregnancy, and other topics.
We have reprints we can send to you. They are $5.00 shipping and handing sent to US or Canada, $7.00 shipping and handling sent elsewhere. To order on-line, go to http://www.itppeople.com/jcopies.htm or send a check to PDSA, P.O. Box 61533, Potomac, MD 20859. You can fax your credit card order to 301-294-3125
We thank Dr. Cines and the University of Pennsylvania for helping us with this.
Did you know that 31% of our survey respondents have decided to live with their current counts? Did you know that 38% of our respondents used positive thinking in an attempt to elevate their platelets?
From August through December, 2001, we gathered 916 replies to our survey entitled "Non-Traditional Treatments of ITP". You can view these and other preliminary survey results at http://www.itppeople.com/surveyres/. We continue to analyze the large amount of data. Final results may vary.
We'll discuss these preliminary and additional results at our conference during the Sunday session.
Researchers studying autoimmune liver disease report that Vitamin D appears to be an immune system modulator. They report that administration of Vitamin D prevents disease in several autoimmune animal models and variations in the structure of the Vitamin D receptor (VDR) have been linked to autoimmune disease.
Vitamin D is known as the sunshine vitamin. Your body can produce it when sunlight interacts with a compound on your skin. It is best known for its role in controlling calcium absorption.
Unfortunately, there was no mention of ITP in the article, advice on the length of your next sun bath, or the impact of sunscreen, but this seems like it could be a promising area of research.
For more information see: http://www.medscape/com/viewarticle/433384
We are putting the finishing touches on the spring edition of "The Platelet News". This issue will have 20 pages of ITP information including "Coping with Corticosteroids" by Andrew Weil, MD, "Report from the ASH Hematology Meeting: The Form and Diagnosis of ITP", "Is ITP Treatment Different in the US and UK? Report from the ITP Association Convention," "The Child with ITP: Is Pharmacotherapy or Watchful Waiting Best?" "ITP Research News," plus our features: "In the News", "A Different View", "Abstracts of Interest" and more.
The Platelet News is a quarterly publication sent to our members. For more information and to become a member of PDSA, go to http://www.pdsa.org/joinus.htm or send a check to PDSA, P.O. Box 61533, Potomac, MD 20859. A print copy is sent to members in the US and Canada. We send an e-mail copy to other locations.
In our April 29 issue of the platelet e-news we erroneously reported that IDEC was filing an Investigational New Drug application (IND) for Rituxan as a treatment of ITP in anticipation of conducting a phase 3 clinical trial. It is Genentech that is filing the IND and will be conducting the trial. Genentech and IDEC work very closely in developing and marketing Rituxan. See www.gene.com.
WinRho SDF®, Rho (D) Immune Globulin Intravenous (Human), is a medication specifically designed to treat ITP that may help you maintain platelet levels. WinRho SDF® has not been linked with some of the troublesome side effects sometimes encountered with long-term steroid treatment. When they occur, side effects related to therapy with WinRho SDF® have generally been mild to moderate. The most common— headaches, chills, and fever—were seen in 2% or less of 848 infusions that were studied in clinical trials with WinRho SDF®.[1] Your doctor may have you take acetaminophen (eg, Tylenol®) before therapy to help you avoid these side effects.
Talk with your doctor to find out whether WinRho SDF® is right for you.
Reference:
1. WinRho SDF® Package Insert. February 2002.
Please go to www.nabi.com/products/WinRhoCurrent.pdf for prescribing information for WinRho SDF®.
WinRho SDF® is prepared from human plasma, and the potential to transmit infectious agents and theoretically, the Creutzfeldt-Jakob (CJD) agent cannot be totally eliminated. WinRho SDF® should not be given to persons who have had an anaphylactic or severe systemic reaction to human globulin, who are Rh-negative, or who have been splenectomized. WinRho SDF® may cause anaphylactic reactions in individuals who are deficient in IgA. Due to the presumed mechanism of action of WinRho SDF®, a decrease in hemoglobin is an expected adverse event. WinRho SDF® should therefore be used with caution in patients with hemoglobin <8 g/dL. Following administration of WinRho SDF®, Rho(D)-positive ITP patients should be monitored for signs and/or symptoms of intravascular hemolysis (IVH), clinically compromising anemia, and renal insufficiency. IVH-related complications that have been reported are death (four cases reported between May 1996 and April 1999), acute onset or exacerbation of anemia, acute onset or exacerbation of renal insufficiency and requirement for transfusion following WinRho SDF® administration. Infusion-related adverse events such as headache, chills, and fever may also occur.
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
This e-newsletter is published by the Platelet Disorder Support Association, P.O. Box 61533, Potomac, MD, 20859, phone/fax: 1-87-Platelet or (301) 294-5967, web: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
Contents:
If you plan to come to our conference, please register by June 18 so we can be sure we have enough food, chairs, and other things we need to make everyone comfortable.
Our conference will be held June 21-23, 2002 at the Marriott Mission Valley in San Diego, CA. For more conference information and to register, go to http://www.pdsa.org/conference.htm.
Conference sponsors include the DAISY Foundation, Genentech/IDEC, Nabi and others. We rely on our sponsors to help make our ITP conference possible. We appreciate their support.
Cerus Corporation and Baxter International won European approval for a screening system that improves the safety of platelet transfusions. The system uses ultraviolet light to eliminate rare transmissions of HIV, hepatitis and other viral and bacterial infections not currently caught by other screening measures. The corporations hope to win US approval to use the system to screen blood platelets by early next year.
For more information see http://www.baxter.com/utilities/news/releases/2002/06-04-02intercept.html
Also reported in the Wall Street Journal, June 5, 2002.
Researchers at Columbia University and the University of California have completed a phase I/II clinical trail of anti-CD3 monoclonal antibody that helped patients with type 1 diabetes reduce their need for insulin without debilitating side effects, according to recent articles in The New England Journal of Medicine and TIME magazine. Type 1 (juvenile-onset) diabetes is an autoimmune disease where the body destroys the insulin-secreting islet cells of the pancreas. The treatment works more selectively and requires a shorter treatment period than other immunosuppressive drugs. The good news for us is that this treatment may hold promise for other autoimmune diseases. The next disease on their research list is a kind of autoimmune arthritis associated with psoriasis.
For more information see:
About 83% of patients in a study at the University of Modena, Italy, responded positively to relatively low doses of cyclosporine A (CyA) according to a study published in the journal Blood and recounted in Hem/Onc Today. Giovanni Emilia, MD and his colleagues studied the effects of CyA on 12 patients with severe, refractory, chronic ITP. The study reported that clinical improvements were sustained in at least half the patients after they stopped taking the drug. Other patients continued on a low-dose treatment without major side effects.
See: Blood, 15 February 2002, Vol. 99, No. 4, pp. 1482-1485, Hem/Onc Today, Vol. 3 No. 6, p. 1.
For more information go to:Our Maryland office will be closed June 20 - June 25 for our conference. Our next e-news will be sent July 1.
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
This e-newsletter is published by the Platelet Disorder Support Association, P.O. Box 61533, Potomac, MD, 20859, phone/fax: 1-87-Platelet or (301) 294-5967, web: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
Contents:
Hematologists at the National Institutes of Health are currently seeking adult patients with Immune Thrombocytopenia (ITP) to participate in a pilot clinical study using a new monoclonal antibody called daclizumab. Daclizumab acts by inhibiting activated T lymphocytes and is extremely well-tolerated; platelet responses as well as the ability to decrease or discontinue other medications (such as prednisone) will be assessed. The treatment is free and is given on an outpatient basis over an eight week period; patients may recive some infusions of the medication through their local hematologist. In addition, two follow-up visits at the NIH once the treatment has ended are required. Splenectomy is not a requirement for inclusion in the study. Participants must be 18 years of age or older, not pregnant or breast-feeding, and able to give informed consent. If interested, please contact Dr. Patrick Fogarty via Donna Jo McCloskey, R.N. at (301) 496-5150.
(For more information on daclizumab see: http://www.rocheusa.com/products/zenapax/pi.html)
POSITIVE THOUGHTS CAN HELP YOUR IMMUNE SYSTEM
Thoughts can cause the release of hormones that bind to your DNA and affect how your genes interact with your the immune system, according to a June 21 article in the Wall Street Journal. These subtle changes in gene expression can now be measured using microarray analysis and 'gene chips'.
In our recent survey of "Non-traditional treatments of ITP" 41% of the people who used positive thinking felt it helped their platelet counts. See our preliminary survey results at http://www.itppeople.com/surveyres/
We received rave reviews from participants, speakers, and sponsors for our recent ITP conference held June 21-23 in San Diego, CA. We know that many of you are ill or were unable to attend for other reasons so we taped the entire conference. The video tapes and audio CD's are being prepared and will be ready near the end of July. If you order them now, we can process your order and ship them as soon as they arrive.
The speakers relied on the information on their slides during their presentations. We recommend purchasing the video tapes so you can see what was on the screen.
There are approximately 10 hours of information. The video tapes are $60.00 plus $5.00 shipping and handling if sent to the US or Canada, $10.00 if shipped elsewhere. The audio CD's are $30.00 plus $4.00 shipping and handling, US/Canada, $6.00 elsewhere.
To order, go to http://www.pdsa.org/conference.htm or send a check or credit card number to PDSA, P.O. Box 61533, Potomac, MD 20859.
We are grateful to Jeff Cooper of Syndikast (www.syndikast.com) for taping our conference.
Our conference was sponsored in part by Nabi, The DAISY Foundation, and Genentech/IDEC. Our sponsors help make our conference possible. We appreciate their support.
Glycoprotein V (on platelets) seems to be the antibody target for patients with gold-induced thrombocytopenia, according to an article in the July 1 edition of the journal, BLOOD. To reach their conclusions, researchers in the UK, Netherlands, and the USA studied patients with rheumatoid arthritis on gold therapy who also had ITP.
Glycoprotein V autoantibodies are found in 10% to 20% of patients with ITP and are particularly prevalent in children whose ITP is associated with varicella infection and in multi-transfused patients with bone marrow failure.
Unfortunately the researchers did not provide information on the impact, if any, of environmental exposure to gold, ex. gold jewelry or gold tooth fillings.
See http://www.bloodjournal.org for more information.
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
This e-newsletter is published by the Platelet Disorder Support Association, P.O. Box 61533, Potomac, MD, 20859, phone/fax: 1-87-Platelet or (301) 294-5967, web: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
Contents:
Human Genome Sciences (HGS) received approval Nov. 1, 2001 to begin testing LymphoStat-B ™ as a potential new treatment for autoimmune diseases. LymphoStat-B ™ is a monoclonal antibody that works by inactivating a natural immune stimulator in B cells. HGS is proceeding with a Phase 1 clinical trial for patients with lupus to determine the safety and dose for adult patients with this disease. In the future, the drug may be tested in patients with other autoimmune diseases, including ITP.
For more information see: http://www.hgsi.com/products/LSB.html
(We thank the vigilance of the readers of our discussion group for posting a reference to this information)
The Intercontinental Childhood ITP Study Group (ICIS) has initiated two registries for children with ITP. Registry II follows bleeding patterns over time. It will further the understanding about the progression of ITP and help determine those children at high risk for serious bleeding. The Splenectomy Registry will track the responses, management and safety of splenectomy in children.
For more information see: http://www.unibas.ch/itpbasel/
If your child is between the ages of 4 months and 20 years and newly diagnosed or you are considering a splenectomy for your child, contact your physician about participating. The registry information will be a big help to researchers studying ITP.
Help ITP research. We hope some of you plus your friends and family can join the runners on September 28 for a 5K run/walk at Mountwood Park in Parkersburg, WV. Chris Dower has organized this annual race and named PDSA as recipient of the contributions this year. We appreciate his thinking of us.
For more information see http://www.iplayoutside.com/Events/2002/09/4836.html or contact Chris at Christopher.Dower@pepsi.com
Would you like to meet others with ITP or find an ITP pen pal? Our Name Exchange Program is designed to help you. Twice a year, in January and July, we distribute the names, addresses, and e-mails of members who elect to participate to everyone on the list. We've heard from some of our members that they've met some great new friends this way.
We will be preparing the July list for distribution soon. If you want to be on the name exchange list you must be a member of PDSA (contribute $25 or more per year). If you are not a member, you can join at http://www.pdsa.org/joinus.htm or send a check to PDSA, P.O. Box 61533, Potomac, MD 20859.
If you are a member and would like to participate, just send us an e-mail giving us permission to use your name, address, and e-mail. If you are a member and are currently participating in our Name Exchange Program, you don't need to contact us.
Note: This is a closed, confidential list sent only to members who have given their permission to distribute the information and used only for personal contact.
Twenty-one states have ombudsmen who handle health insurance complaints for no charge. In Maryland, the service is under the attorney general's office. If you have an insurance reimbursement issue, check with your state offices to find information about this service in your area.
Or…there are firms that will assess your case and help you for a fee. See: http://www.healthcareadvocates.com/ or http://www.medconsumer.com/
If you have chronic ITP, you have treatment options other than splenectomy.
WinRho SDF®, Rho (D) Immune Globulin Intravenous (Human), is a medication specifically designed to treat ITP that may help you maintain platelet levels. Clinical studies have shown that many people respond well to WinRho SDF®—including one study that followed participants for over 2 years!1,2 Continuing therapy allowed patients more time for response and gave them time to improve on their own.2
WinRho SDF® has not been associated with some of the troublesome side effects sometimes encountered with long-term corticosteroid treatment. Compared with other IV therapies, it’s more convenient—the complete injection time is only 3 to 5 minutes approximately once a month.
Talk with your doctor to find out more about maintenance therapy and whether WinRho SDF® is right for you.
References:
1. Bussel JB, Graziano JN, Kimberly RP, Pahwa S, Aledort LM. Intravenous anti-D treatment of immune thrombocytopenic purpura: analysis of efficacy, toxicity, and mechanism of effect. Blood. 1991;77:1884-1893.
2. Cooper N, Woloski BMR, Fodero EM, et al. Does treatment with intermittent infusions of intravenous anti-D allow a proportion of adults with recently diagnosed immune thrombocytopenic purpura to avoid splenectomy? Blood. 2002;99:1922-1927.
Please go to www.nabi.com/products/WinRhoCurrent.pdf for prescribing information for WinRho SDF®.
WinRho SDF® is prepared from human plasma, and the potential to transmit infectious agents and theoretically, the Creutzfeldt-Jakob (CJD) agent cannot be totally eliminated. WinRho SDF® should not be given to persons who have had an anaphylactic or severe systemic reaction to human globulin, who are Rh-negative, or who have been splenectomized. WinRho SDF® may cause anaphylactic reactions in individuals who are deficient in IgA. Due to the presumed mechanism of action of WinRho SDF®, a decrease in hemoglobin is an expected adverse event. WinRho SDF® should therefore be used with caution in patients with hemoglobin <8 g/dL. Following administration of WinRho SDF®, Rho(D)-positive ITP patients should be monitored for signs and/or symptoms of intravascular hemolysis (IVH), clinically compromising anemia, and renal insufficiency. IVH-related complications that have been reported are death (four cases reported between May 1996 and April 1999), acute onset or exacerbation of anemia, acute onset or exacerbation of renal insufficiency and requirement for transfusion following WinRho SDF® administration. Infusion-related adverse events such as headache, chills, and fever may also occur.
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
This e-newsletter is published by the Platelet Disorder Support Association, P.O. Box 61533, Potomac, MD, 20859, phone/fax: 1-87-Platelet or (301) 294-5967, web: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
The new HighWire Portal allows you free access to abstracts from the 336 HighWire Journals as well as the abstracts in Medline’s 4,500 journals. You can sign up for free alerts to new content. There is a fee for some of the full text of the articles.
See: http://highwire.stanford.edu.
Alltheweb, a new search engine based in Oslo, Norway, indexes more pages than any other site (2.1 billion). Unlike other search engines, Alltheweb tries to decipher the intent of the query by analyzing language patterns and identifying common phrases. Alltheweb also updates its pages more frequently than other search engines.
See: http://www.alltheweb.com
The Senate Appropriations Committee approved its fiscal year 2003 Departments of Labor, Health and Human Services and Education Appropriations bill Thursday, July 18. The funding recommendation included $27.3 billion for the NIH, a 15.7% increase above FY 2002 and the final installment of the five-year plan to double NIH’s budget between FY 1999 and FY 2003.
The recommendation includes $2.8 billion for the NIH’s National Heart Lung and Blood Institute (NHLBI), $43.6 million more than the budget request and $259.8 million more than the FY 2002 appropriation. This amount includes funds to be transferred from the Office of AIDS research.
The bill includes the following comment: “Blood disorders - The Committee commends the NHLBI for its actions to establish a Transfusion Medicine/Hemostasis Clinical Research Network…” This includes ITP research.
You can view the entire appropriation on-line at
http://thomas.loc.gov/cgi-bin/cpquery/R?cp107:FLD010:@1(sr216
From ASH NewsLink July 31, 2002 www.hematology.org
The Food and Drug Administration (FDA) issued a statement last month recommending health-care providers limit male fetuses and boys’ exposure to di-2-ethylhexyl-phthalate, a common softener in medical devices made of polyvinyl chloride.
Phthalates are used as solvents and to make plastics more flexible. They’re commonly found in food wrap, paint, medical supplies, pesticides and nail polish. Recent animal tests have shown that the chemicals can damage the male reproductive system.
Researchers at the Centers for Disease Control and Prevention in Atlanta have detected relatively high quantities of dibutyl phthalate in the urine of young women. In an independent study by three consumer lobbying groups, 52 of 72 cosmetic products tested contained a least one of the phthalates. The groups recommend that women of childbearing age avoid using these products.
From Science News Vol. 162, July 20, 2002
More co-sponsors are wanted for upcoming legislation. To date, 20 senators have become co-sponsors of the Rare Diseases Act of 2001 (S. 1379), a bill that would encourage the development of new and better rare-disease diagnostics and treatments. More than 50 members of the House of Representatives are co-sponsoring two companion bills, the Rare Diseases Act of 2002 (H.R. 4 013) and the Rare Diseases Orphan Product Development Act of 2002 (H.R. 4014).
For a complete list of co-sponsors see http://www.rarediseases.org/nord/washington/cosponsors/
If your congressmen have not signed on as co-sponsors, you can contact them directly to encourage their participation.
From National Organization for Rare Diseases www.rarediseases.org
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
This e-newsletter is published by the Platelet Disorder Support Association, P.O. Box 61533, Potomac, MD, 20859, phone/fax: 1-87-Platelet or (301) 294-5967, web: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
The Chinese remedy Tripterygium wilfordii Hook F (TWHF) extract was well tolerated and offered benefit to patients with refractory rheumatoid arthritis, according to a study reported in the July issue of Arthritis & Rheumatism. Of the 35 patients in the study 8 of 10 in the high dose group, 4 of 10 in the low dose group and none of the 12 of the placebo group showed an improvement. Extracts of TWHF have been widely used in China to treat a variety of autoimmune and inflammatory diseases.
Arthritis Rheum.2002;46:1735-1743 as reported in Medscape
Researchers in Sweden found acrylamide in some starch-based foods such as potato chips, french fries, cookies, cereals and bread above the level given in the World Health Organization's Guideline Values for drinking water. Unlike preservatives that are added to foods, acrylamide forms as a result of unknown chemical reactions during high-temperature baking or frying.
While acrylamide is known to cause cancer and nerve damage in laboratory animals, no studies have been done to determine the relationship between acrylamide and cancer or other problems in humans.
The Center for Science in the Public Interest commissioned the Swedish government to test the level of acrylamide in a small sampling of U.S. Foods. The results ranged from 1 microgram/serving of El Paso Taco Shells to 72 micrograms/serving for McDonald's French Fries. The EPA allows no more than 0.12 micrograms in an 8-oz. glass of water.
More research is required to determine how acrylamide is formed during the cooking process and the relevancy to human cancers.
For more information see: http://www.who.int/inf/en/pr-2002-51.html and http://www.cspinet.org/new/200206251.html
Twelve states now license naturopath doctors while seven others have active pro-licensing efforts. While the number of trained naturopaths is small, it has doubled over the past five years. Naturopath doctors don't have conventional medical degrees and usually specialize in treating diseases with vitamins, herbs or other supplements. In some states, medical associations have tried to block licensing of naturopathic doctors suggesting that naturopathic medical schools don't provide enough training.
States that license naturopaths include: AL, AZ, CT, HI, KS, ME, MT, NH, OR, UT, VT, WA. States with active licensing efforts include: CA, NY, FL, ID, NC, NM, PA.
Washington Post, August 22, 2002
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
This e-newsletter is published by the Platelet Disorder Support Association, P.O. Box 61533, Potomac, MD, 20859, phone/fax: 1-87-Platelet or (301) 294-5967, web: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
Contents:
Several recent studies show that reducing sleep to 6.5 or fewer hours for successive nights causes potentially harmful metabolic, hormonal, and immune changes. Specifically, researchers found increased insulin resistance, a condition that can lead to diabetes, increased weight gain, increased concentrations of stress hormones, and increased inflammatory response. These findings are preliminary, however they do point to an area of study that could have an effect on long term health.
From Science News 9/7/02 Vol. 162
The incidence of allergic and autoimmune diseases has been rising steadily in developed countries in the past three decades. The incidence varies on a North / South gradient. Those countries further from the equator have more cases. This geographic variation could be attributed to socioeconomic differences, environmental differences, exposure to sunlight, or a combination of all of these and other factors.
In several studies, researchers noted that there was an increase in autoimmune diseases for both people and research animals raised in more sterile environments that limited experience with infectious diseases during early development. The irony is that researchers may now look for new ways to introduce benign infectious diseases because of the benefits they seem to confer in reducing the later onset of allergic and autoimmune diseases.
From: The Effect of Infections on Susceptibility to Autoimmune and Allergic Diseases, Jean-Francois Bach, M.D., D.Sc. New England Journal of Medicine Vol. 347: 911-920, September 9, 2002 Number 12.
You can purchase the article for $10.00 at www.nejm.org
Considering joining a clinical trial for ITP? Want to know more about how clinical trials work? Here’s a must read. “Should I Enter a Clinical Trial? A Patient Reference Guide for Adults with a Serious or Life-Threatening Illness” explains the objectives, risks, benefits, and implications of a clinical trial. Read it. Discuss with your doctor. Make more informed decisions.
The guide is available FREE at - http://www.ecri.org/documents/bctoc2.html
You can find a list of ITP clinical trials at http://www.itppeople.com/clinical.htm
Some of you have reported that you’ve received messages from us containing a computer virus. We did not send these messages. They are randomly generated by a virus on someone else’s computer that places a random e-mail address in the ‘From’ portion of the message. We scan the messages we send and receive and frequently check our computers for virus infections.
We receive about 20 virus filled messages a day that are automatically deleted by our virus protection software. We know the people who send these to us and others are unaware this is happening. Because the ‘From’ portions of the e-mails are erroneous, there is no way to directly identify where these messages are originating.
The viruses that are most problematic to us and others have an inappropriate subject, an introduction of a few sentences and an attachment that contains the virus. Some messages purport to contain software that repairs viruses in which the attachment actually contains the virus.
We have a large electronically linked ITP community. It is unfortunate our energies are devoted to dealing with those whose intent is to create problems and not solve them.
If you have not done so, please check your computer for a virus infection. You can purchase virus protection software from www.norton.com and other vendors.
The 9/9/02 version of the e-news headline stated, “Gene Linked to ITP”. According to John Semple, PhD, “The paper in Blood did not find a gene associated with ITP. It simply showed that the antibodies use a narrow array of V-region gene usage. The somatic mutation studies are important as they formally prove that ITP is a T cell mediated pathogenesis.”
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
This e-newsletter is published by the Platelet Disorder Support Association, P.O. Box 61533, Potomac, MD, 20859, phone/fax: 1-87-Platelet or (301) 294-5967, web: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
We've heard from several parents noting a disproportionate number of children with ITP in their schools. Some patients report their platelets dip when they are exposed to pesticides or other chemicals. Back to school or not, here are some helpful tips.
--Get the Environmental Protection Agency's new brochure "Protecting Children in Schools from Pests and Pesticides" to use in encouraging school officials to adopt the least toxic pest management. (Call 800-490-9198, document number EPA-735-F-02-014) or see www.epa.gov/pesticides/ipm.
--Avoid polyvinyl chloride (PVC) or vinyl clothing, shoes, and school supplies. PVC is a known carcinogen, can damage organs, and suppress the immune system. Soft vinyl contains phthalates which, in addition to effecting sexual development, are considered a probable carcinogen. Test by Greenpeace found toxic heavy metals, lead and cadmium in vinyl backpacks and raincoats. See www.childenvironment.org
Autoimmune research
The advocacy group of the American Autoimmune Related Diseases Association (AARDA), of which PDSA is a member, has been working to get congressional funding to implement the Autoimmune Diseases Research Plan of the National Institutes of Health (NIH). The goal is to get full funding (about $450 million) in FY 2004 with initial funding in FY2003, if possible. The plan is in review by the Secretary of Health and Human Services. T. Harkin (D-IA), B. Boxer (D-CA), E. Kennedy (D-MA) and C. Morella (R-8-MD) have proposed funding the Research Plan in various bills. The Autoimmune Diseases Research Plan was requested in Title XIX of the Children's Health Act of 2000 (P.L. 106-310). See www.aarda.org for more information.
Rare Diseases research and development
H.R. 4014 (the Rare Diseases Orphan
Product Development Act) sponsored by M. Foley (R-FL), was successfully voted out of committee by unanimous consent. H.R. 4013 (the Rare Diseases Act) sponsored by J. Shimkus (R-IL) is already on the calendar for a vote in the House of Representatives. It is our hope that both H.R. 4013 and 4014 will be brought to the full House for a vote within the next two weeks. This update from NORD. See www.rarediseases.org for more information.
Please contact your legislative representatives encouraging their support of these important initiatives.
"…the development of platelet-reactive antibodies associated with ITP is driven by an encounter with diverse platelet antigens through the clonal expansion of B-cells…The extraordinarily high usage of the VH3-30 heavy-chain gene in these patients has implications for the pathogenesis, diagnosis, and management of chronic ITP. " report researchers at the University of Pennsylvania and the Weill Medical Center of Cornell University in the August 15 issue of Blood (Blood. 2002;100:1388-1398) See www.bloodjournal.org for more information.
Join PDSA on-line at www.pdsa.org/joinus.htm, send a check to PDSA, P.O. Box 61533, Potomac, MD 20859, fax your donation to 301-294-3125, or call us toll-free at 1-87-PLATELET. Just list the additional copies you select in the notes section of your on-line order or on your mailed order form.
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
This e-newsletter is published by the Platelet Disorder Support Association, P.O. Box 61533, Potomac, MD, 20859, phone/fax: 1-87-Platelet or (301) 294-5967, web: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
Contents:
The American Society of Hematology awarded Barbara Alving, MD their 2002 Outstanding Service Award. Dr. Alving played a major role in establishing the new Transfusion Medicine/Hemostasis Clinical Research Network, a group of up to16 clinical centers and one data coordinating center devoted to testing promising treatments for ITP and other non-malignant blood disorders. The grants will total $6 million per year for 5 years with the possibility of extension. Now the Deputy Director of the National Heart, Lung, and Blood Institute of the National Institutes of Health, Dr. Alving has been very supportive of PDSA. We are thrilled that her hard work on behalf of lesser known blood diseases was recognized with this honor.
Professor John Lilleyman was awarded a Knighthood by Her Majesty the Queen of England in the 2002 Jubilee Honours List for recognition of his work as President of the Royal College of Pathologists, notably his leadership during the Alder-Hey scandal. Sir John Lilleyman has a distinguished career that includes ITP research and editing hematology publications. He is a medical advisor for the ITP Support Association in the UK and spoke at their conference in April where he was very generous in answering our questions and providing a copy of the notes of his talk. We at PDSA join the ITPers in the UK in congratulating Sir John on this recognition of his truly great accomplishments.
In ITP, the platelets are eliminated from the body by macrophages, a type of white blood cell. Several recent studies show that defective removal of the dead cells can trigger inflammation and autoimmune diseases. A key issue facing researchers is how the body discriminates between ready-to-die cells and healthy cells. This ‘eat-me’ message to the macrophages may be signaled by the appearance of phosphatidylserine on the cell surface. Researchers at the University of Edinburgh noted that healthy cells may actually fend off macrophages. This area of study is important for us if researchers learn to curb the rapid destruction of seemingly dying cells (platelets, for us).
For more information see:
The print copy of the Summer/Fall issue of our 20 page quarterly newsletter, The Platelet News was mailed September 30. If you are a member you should be receiving your copy soon. You also have the option of receiving a .pdf version of the newsletter, avoiding the mail delays and helping to save printing costs, postage costs, and a few trees in the future. Just send an e-mail to us at pdsa@pdsa.org indicating that you want to receive the .pdf version.
The Summer/Fall issue contains articles on the survey of non-traditional treatment of ITP, treatment payment tips, ITP registry, success stories, ITP conference 2002 report, answers to your questions, abstracts, ITP calendar, and more. To receive your copy, join PDSA before October 15. Go to www.pdsa.org/joinus.htm for more information.
Researchers at Georgetown University took 44 volunteers who suffered from rheumatoid arthritis, an autoimmune disease and separated them into groups. Some patients received ‘hands-on’ prayer, others had knowledge they were being prayed for, some had no knowledge they were the object of prayer. Participants who received ‘hands-on’ prayer showed marked improvement, but those who received distant prayer or did not believe they were being prayed for did not show any statistical improvement in health or relief from pain.
See: http://www.awesomepower.net/pogdocs/smj2000matthews.pdf for the study report.
Note that 45.83 percent of the people who responded to our survey of non-traditional treatments of ITP reported some benefit from prayer with 24.87 reporting sustained benefit. See www.itppeople.com/surveyres/ for results from our survey.
When you think of fall do you think of a stuffy nose and not brightly colored leaves? A neti pot can help. It is a small container that you fill with warm salt water. Then you pour the warm salt water over your sinuses. The salt rinse helps open the sinus passages and prevent bacteria from multiplying.
You can purchase a ceramic neti pot or its cousin the plastic narial nasal cup from us in the Platelet Store, http://www.itppeople.com/store/things.htmhttp://www.itppeople.com/store.
The cost for our plastic or ceramic versions is $17.95 plus shipping.
Join me and hundreds of satisfied and healthier ITP people in using this simple, healthy technique.
"Of 85 patients with chronic post nasal drip…were 79 cases that were markedly improved (by daily irrigation at home) so that symptoms ceased and further treatment was unnecessary." - Max Unger, MD, from an article in The Eye, Ear, Nose and Throat Monthly.
See further testimonials on our store pages.
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
This e-newsletter is published by the Platelet Disorder Support Association, P.O. Box 61533, Potomac, MD, 20859, phone/fax: 1-87-Platelet or (301) 294-5967, web: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
Contents:
A new study of 3,680 predominantly white women in an endometriosis pain support organization measured the prevalence of their other diseases compared to the general female population in the United States. The women in the support group experienced more autoimmune inflammatory diseases than other women as well as more chronic fatigue, hypothyroidism, and allergic or skin conditions.
Note that the study results may not apply to other ethnic groups, age groups, or women with endometriosis who do not experience the type of pain reported by members of the support group. Past studies have shown that endometriosis may occur as a result of problems with the immune system. Such problems may lead to other diseases.
Read the abstract at http://humrep.oupjournals.org/cgi/content/abstract/17/10/2715
Spyware is a type of program installed on your computer without your consent to gather information about you or your organization. The program will record your mouse clicks and broadcast that information to another computer. Usually it gets onto your PC by hiding behind other software when you download it. Anti-virus software won’t find spyware because it looks like the other software you chose to install.
Luckily, you can check your computer for spyware. If you have a windows machine go to lavasoftusa.com and download a free utility called Ad-Aware. Mac owners can try Spring Cleaning ($50.00) form Aladdin Systems. See SpyChecker.com for a database listing more than a thousand of these programs.
(From TIME magazine, October 7, 2002)
(I ran Ad-Aware on our PDSA PC’s and was amazed at what I found. I suggest everyone run this software…ed.)
Most drugs prescribed for children have been tested only in adults with the assumption that the drugs’ effect in children would be similar. Rules requiring drug companies to test drugs on children were implemented in 1998. On Thursday, October 17, Judge Henry F. Kennedy, Jr. of the Federal District Court, overturned the ruling saying, “The pediatric rule exceeds the Food and Drug Administration’s statutory authority and is therefore invalid.
The FDA argued that the “correct pediatric dose cannot necessarily be extrapolated from adult dosing information.” This could lead to children receiving inappropriate doses, or as they get older, less effective medicines.
Hillary Rodham Clinton is the chief Senate sponsor of a bill to write the pediatric drug testing requirements into law. The bill was approved by a Senate committee but has not reached the Senate floor.
The World Health Organization (WHO) and the Environmental Protection Agency (EPA) agree that dioxin (toxic compounds that are the byproducts of some natural decomposition and manufacturing processes) can adversely affect human health at lower exposure than previously thought. Some adverse non-cancer effects of dioxin including a weakened immune response can occur at or near levels to which some portions of the general population are now exposed.
The EPA has drafted a Dioxin Reassessment paper. However, the official release of this document has been stalled. On August 1, Congresswoman N. Pelosi (D-CA) and 65 members of the House of Representatives signed and delivered a letter to EPA administration requesting the release of this report.
The current document is available at http://cfpub.epa.gov/ncea/cfm/dioxin.cfm
On Thursday, October 17, 2002 both the Rare Diseases Act,
and the Rare Diseases Orphan Product Development Act,
passed the Senate. The Bills now go to President Bush for his signature.
These bills will increase rare disease research supported by the National Institutes of Health and the Food and Drug Administration.
Update courtesy of NORD at www.rarediseases.org
The Advocacy Committee of The National Coalition of Autoimmune Patient Groups was successful in gaining strong bi-partisan Congressional support for implementing the NIH Autoimmune Diseases Research Plan. Support included Sens. Kennedy, Harkin, Biden, Boxer, Frist, Stabenow, and Reps. Morella, Waxman, Bilirakis, Brown, Regula, and Lowey.
The Advocacy Committee also worked closely with NIH to accelerate the Research Plan's review. The Plan was forwarded in July to HHS Secretary Thompson's office for final approval. The Committee is aiming for full funding in FY04 with the potential for initial funding in FY03 supplemental appropriations. Funding is dependant on the release of the Research Plan, scheduled for early next year.
See www.aarda.org for more information.
Here is information to contact your senator, representative, or the President about any of these issues.
House of Representatives: http://www.house.gov/writerep/
Senate: http://www.senate.gov/
White House Opinion Phone (202) 456-1111
White House Fax: (202) 456-2461
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
This e-newsletter is published by the Platelet Disorder Support Association, P.O. Box 61533, Potomac, MD, 20859, phone/fax: 1-87-Platelet or (301) 294-5967, web: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
Contents:
Each year close to 14,000 hematologists from all over the world gather at the American Society of Hematology conference. This year the conference was held December 6-10 in Philadelphia, PA. We were there to hear the latest ITP news and talk to hematologists interested in ITP. I wish we could report a wonderful new treatment that would solve everyone’s platelet woes. It was not to be. We were, however, very encouraged with the interest in the disease and some of the progress made in understanding and treating it.
There were 3,458 posters, constant simultaneous sessions from 7:30 AM to 5:15 PM, and a 521 page education book. Some of the presentations were incredibly obscure. As one researcher said, “There were just too many letters”
Sorting through some of it, we heard researchers report new clinical results using Rituxan, CellCept, Cyclosporine A, CAMPATH, bone marrow transplant and antibiotics to treat H-pylori infection associated with ITP. Of these treatments, Rituxan seemed most promising. There was continued interest in WinRho SDF and IVIg treatments. There was also an increased understanding of the role inflammation plays in eliminating platelets.
Some highlights for us included hearing that hematologists were 1) looking to replace prednisone for the first thing they prescribe for an ITP patient, 2) increasing sensitivity to the fact that many patients are hesitant to have their spleen removed, 3) exploring various options in patient/doctor communication, 4) become more accepting of alternatives by reporting results from Angelica Polysaccharide (a compound extracted from Danggui, a Chinese herb), 5) publicizing the decreased quality of life of ITP patients from the norm.
You can read the ASH abstracts at: http://www.hematology.org/meeting/abstracts.cfm. We will summarize the most important presentations for ITP patients in the Spring edition of The Platelet News.
We are grateful to Nabi Biopharmaceuticals for their restricted education grant that helped fund our conference presence and for making the Corporate Friday Education session available to ITP patients.
Aventis Pasteur Limited is withdrawing single dose vials only of Menomune ™ Meningococcal vaccine because of reduced stability of the serogroup A component after six months of shelf life. This recall applies to patients receiving vaccine since May 16, 2001. Meningococcal vaccine is given to patients who are about to undergo splenectomy because of a splenectomized patient’s increased susceptibility to meningitis. Serogroup A meningococcal disease is rare in North America. The largest and most frequently recurring meningitis outbreaks occur in sub-Saharan Africa.
If you have received this vaccine after May 16, 2001, please contact your physician to determine if you should be re-vaccinated.
For more information see:
“Substituting liposomal vincristine for free vincristine in chemotherapy regimen may improve responses in patients with aggressive lymphomas.” The libosomal form of the drug is less toxic than free vincristine and in mouse models was more active than free vincristine. Vincristine is occasionally used to treat ITP.
From Hem/Onc Today, Vol 3, No. 12, December 2002. See www.hemonctoday.com
The FDA approved two devices to improve blood safety. One is a leukocyte reduction filter to allow blood centers to process blood faster. The second is a bacterial detection system that detects both gram-positive and gram-negative bacteria in donor and apheresis platelets. The bacterial detection device detects changes in oxygen concentration that are a result of bacterial growth.
From Hem/Onc Today, Vol 3, No. 12, December 2002.
Researchers at the National Health Services in Italy tested melatonin in three patients with refractory ITP. All patients had a partial response after one month and a continued response with the treatment. The only reported side-effect was drowsiness.
From American Journal of Therapeutics 2002, 9(6) 524-526.
A consortium of national medical societies and malpractice carriers, known as the eRisk Working Group for Healthcare developed guidelines to limit the liability risks of communicating via e-mail. The recommendation is that physicians only conduct e-mail consultations if they have previously established a relationship with the patient. State regulators have recently taken action against services that provide on-line consultations and prescribe medications for patients they have never seen. www.medscape.com/viewarticle/445693
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
This e-newsletter is published by the Platelet Disorder Support Association, P.O. Box 61533, Potomac, MD, 20859, phone/fax: 1-87-Platelet or (301) 294-5967, web: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
Contents:
Medical Matrix is a new search engine designed for the hematology/oncology professional from the publishers of “Hem/Onc today”. You don’t have to be a physician to use it. The search engine has links to hundreds of helpful sites rated by the publishers and an all-site search that makes it easy to find information.
You can get a free 24 hour trial pass at www.medmatrix.org.
The hospital industry is becoming more aware that hospital patients are exposed to a host of dangerous materials including dioxins, phthalates, mercury and the volatile organic compounds (VOCs) found in many solvents and paints. These dangerous substances can be found in the walls, carpets, and sometimes in the IV bags delivering the problem substances directly to the blood. When disposable devices made from PVC are incinerated cancer-causing dioxin fumes are released into the air.
Knowing these hazards, hospitals from Beth Israel Medical Center in New York to Good Samaritan Hospital in Portland Oregon are changing their policies and calling for no PVC and low or no VOCs in their building products and medical equipment. They are including other health promoting environments such as gardens in their designs.
The American Society of Healthcare Engineering released a statement calling for environmental friendly construction practices. The U.S. Green Building council has begun discussing construction guidelines for health care facilities.
If you feel the hospital you go to can provide a healthier environment contact these organizations. They may be able to help.
In the 1980’s congress established the Vaccine Immunization Compensation Program (NVICP) to protect doctors and vaccine makers from lawsuits and to provide compensation to parents and children for catastrophic vaccine injuries.
In a recent ruling Judge Samuel Kent ruled that individuals who qualify as claimants under NVICP must first file petitions in the Vaccine Court. The Vaccine Court will only consider claims presented within the mandated limit of 36 months from the onset of the first symptoms of injury or in death cases within 24 months of the date of death or 48 months of the date of injury, whichever comes first. This ruling underlines the fact that parents must act quickly to preserve their rights and those of their child.
There is a bill pending in congress, HR 3741, designed to help more children get access to the $1.7 billion in the trust fund that has been set aside to help vaccine injured children and adults.
For more information on NVICP see: http://www.hrsa.gov/osp/vicp/index.htm
For information on vaccine decisions: http://www.909shot.com
Note: According to researchers in the UK, one in every 22,300 MMR vaccinations will result in admission to a hospital for ITP.
Now you download copies of all of the issues of The Platelet News as .pdf files. The Platelet News is filled with helpful articles designed specially to help those with ITP. The newsletters are sent four times a year to members of PDSA. Often patients who are newly diagnosed want information quickly. By placing the newsletters in our store, everyone can have access to all of the issues.
The cost per issue is $5.00. You can find a list and purchase the download .pdf versions at http://www.pdsa.org/newsletter.htm.
Umbilical cord blood is a prized source of stem cells that can replace the diseased bone marrow of people with leukemia and other illnesses. Unfortunately umbilical cords often don’t contain enough blood for a viable transplant of stem cells that, like marrow cells, can produce new blood cells of various types. Scientists now report that cord blood stem cells proliferate more rapidly when the blood is cultured with a protein called Delta-1 and a combination of blood enhancers.
When these treated cells were transplanted into bone marrow of mice, they began to rebuild the store of red and white blood cells (platelets, too?). Some stem cells found their way to the thymus to begin transformation of T-cells.
For the full text research articles see: http://www.jci.org/cgi/content/full/110/8/1165
While we don’t know the implication of this research specifically for ITP, we do know that bone marrow transplants are sometimes used as a treatment for very difficult cases and that ITP is a T-cell mediated disease.
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
This e-newsletter is published by the Platelet Disorder Support Association, P.O. Box 61533, Potomac, MD, 20859, phone/fax: 1-87-Platelet or (301) 294-5967, web: http://www.pdsa.org/, e-mail: pdsa@pdsa.org
Contents:
Drug dependent antibodies can cause acute thrombocytopenia after the administration of tirofiban or eptifibatide according to a report in the November, 2002 issue of Hem/Onc Today. Tirofiban marketed as Aggrastat by Merck and eptifibatide marketed as Integrelin by Cor Therapeutics are designed to inhibit the action of GPIIb/IIIa receptors on the surface of platelets during the treatment of heart disease.
During a new study by the Blood Research Institute at the Blood Center of Southeastern Wisconsin and the Medical College of Wisconsin a small subset of patients had profound, unexplained thrombocytopenia. After examining this case and other evidence the authors concluded that drug dependant antibodies were responsible for the drop in platelets.
For more information on Aggrastat and to view a video of platelet function go to http://www.aggrastat.com
Low platelet counts have been associated with many drugs. See http://www.itppeople.com/warnings.htm and Dr. James George’s site http://moon.ouhsc.edu/jgeorge/ for a list
The Wall Street Journal has a new on-line Health Industry Edition. You can get two free weeks of access by visiting http://wallstreetjournal.com/health
British ITP Treatment Guidelines
Members of the British Society for Haematology have completed a document outlining standard treatment guidelines for ITP. We anxiously await their publication. They will appear on: http://www.blackwellpublishing.com/uk/society/bsh/
The American Society of Hematology published treatment guidelines in 1996. They are available at http://www.hematology.org/practice/idiopathic.cfm Several hematologists have suggested the ASH guidelines be updated and are seeking funding.
ASH Meeting
The American Society of Hematology meeting is scheduled for December 6 – 10, 2002 in Philadelphia. We will be there taking notes at the many education and poster sessions as well as hosting a booth. We will report the treatment and research news from the meeting in our newsletter and e-news. See http://www.itppeople.com/calendar.htm and http://www.hematology.org for more information about the meeting.
On Friday morning, December 6, we will be attending the “Fourth Annual Review of Immune Thrombocytopenic Purpura”. This meeting sponsored by the Weill Medical College of Cornell University and funded by a grant from Nabi Biopharmaceuticals is not restricted to conference attendees. If you would like to attend, just contact us at pdsa@pdsa.org.
Transfusion Medicine/Hemostatis Clinical Research Network
The National Heart Lung and Blood Institute, a part of the National Institutes of Health has awarded very large grants to research institutions to study and perform clinical trials in non-malignant blood disorders. This includes ITP. We are anxiously awaiting the list of participants. The members of this network will bring a strong focus to ITP research and clinical trials.
Regional Meetings
We will be holding our first regional ITP meeting in Philadelphia on December 5, 2002 at 7:30 PM at the Holiday Inn Express – Mid-town. Dr. Gerald Sandler will speak on “ITP Then and Now”. This meeting is made possible by a restricted education grant from Nabi Biopharmaceuticals. See http://www.itppeople.com/calendar.htm for more information. If you would like to attend or have further questions, e-mail pdsa@pdsa.org.
We will be planning more regional meetings during 2003. These will be announced in our e-mails, newsletter, and appear on our calendar page http://www.itppeople.com/calendar.htm. We look forward to meeting more of you, helping you meet others, and providing more opportunities to learn.
ITP Conference 2003
Reserve this date: June 20-22, 2003. Our 2003 conference will be held June 20-22, 2003 at the Radisson Hotel O’Hare in Rosemont, IL near the large airport serving the Chicago area. Drs. James Bussel, John Semple, and Michael Tarantino have agreed to speak. We will be adding to the speaker list and agenda soon. Watch your e-mail and our web site for more information as we continue to plan. We thank Creta, one of our volunteers, for helping us find the conference space. We really value her assistance.
The attendees at our prior conferences learned much from the presentations and had a great time. You can find information about our conferences 2001 and 2002 at http://www.pdsa.org/conference.htm. We hope to see you in June.
President Bush signed the Rare Diseases Act and the Rare Diseases Orphan Product Development Act into law. The Rare Diseases Act doubles the budget for the Office of Rare Diseases at the National Institutes of Health and authorizes the office to award grants for clinical research into rare diseases. The Rare Diseases Orphan Product Development Act doubles the funding for the Food and Drug Administration’s Orphan Products Research Grant program. We thank NORD for all their hard work in securing passage of these bills.
Approximately 25 million Americans suffer from at least one of the known 6,000 rare disorders. Rare (orphan) diseases are defined as medical conditions affecting fewer than 200,000 Americans.
Beginning with the next issue, the platelet e-news will be sent once a month. We will send periodic announcements between the main issues. This will allow us to separate some of our announcements from the news items and have more flexibility in our timing.
For information on advertising in our e-news letter contact us at pdsa@pdsa.org.
This e-newsletter is published by the Platelet Disorder Support Association, P.O. Box 61533, Potomac, MD, 20859, phone/fax: 1-87-Platelet or (301) 294-5967, web: http://www.pdsa.org/, e-mail: pdsa@pdsa.org