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
Platelet Disorder Support Association
8751 Brecksville Road Suite 150
Cleveland, OH 44141
440.746.9003 | pdsa@pdsa.org
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.
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IMPORTANT!
The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.