This e-newsletter is a publication of The Platelet Disorder Support Association. The information in this newsletter is for educational purposes only. For advice on your unique medical condition, please consult a health care professional.

Contents:

• Fall Newsletter
• ITP Conference 2002
• Survey Update
• Cipro, Doxycycline and Platelets
• ITP Herbal Treatment

FALL NEWSLETTER

We are putting the finishing touches on the Fall edition of the Platelet News. This edition will be 16 pages, 4 pages longer than our last issues. We thank the support of our advertisers and volunteers who made this possible.

The newsletter will include the following:

• Highlights from the ITP Conference 2001:Part 2 – Summaries of the following presentations: “Physiology of ITP” by Dr. John Freedman, “Implications of Splenectomy” by Dr.William Bell, “ITP and the National Institutes of Health” by Dr. Pan Ganguly, and “ITP and Pregnancy” by Dr. Daniel Skupski. If you missed the conference, here’s a chance to catch up on the latest in ITP.
• Lara’s Story: Using Traditional Chinese Medicine to Treat ITP – Part 2. Sophie Bouris is an acupuncturist. She also studies Chinese Medicine. Follow her as she applies Chinese medicine theories in the treatment of her daughter’s ITP.
• Abstracts of Interest – Medical journal abstracts on the morbidity and mortality of ITP, antiphospholipid syndrome in patients with ITP, and inherited thrombocytopenia.
• Your Questions Answered – Four of your questions answered by some of the speakers at our last conference.
• In the News – In the News: A compendium of news clips and recent findings that impact our health and our future.
• And more….Message from the President, Letters, Tip from the Platelet Buddy, Information about the conference…. 

Our newsletter is sent to everyone who contributes at least $25 per year to PDSA. For more information and to join PDSA go to http://www.pdsa.org/joinus.htm. You can join on-line or send a check or credit card number to PDSA, P.O. Box 61533, Potomac, MD 20859. To renew your membership, just use the same forms and procedure as you would when joining for the first time. When we process the membership we can tell that it is a renewal. If you are a current member…thank you. 

PDSA is a 501 (c ) 3 organization. All contributions are tax deductible.

Newsletters are sent via US mail to our US and Canadian members, e-mail to others. Due to the delays in processing the mail we will send an e-mail version of our Fall newsletter to all our members in addition to the paper copies.

ITP CONFERENCE 2002

We’ve finalized the time and location for our 2002 ITP Conference. It will be held at the San Diego Marriott Mission Valley on June 21-23, 2002. Plan your vacation now! 

Our conference will feature top researchers and alternative practitioners plus a chance to meet old friends and make some new ones. 

We’ll have a short meeting on Friday evening, a day similar to our last conference on Saturday, and another meeting on Sunday morning. We have commitments from some of the speakers and are working on finalizing the agenda.

The Marriott in Mission Valley is easy to reach, affordable, and near all of the exciting things San Diego has to offer.

There is so much more to say. Stay tuned to the discussion group, our web site and our Platelet e-news letters for agenda details and registration information as they become available.

SURVEY PROGRESS

We have 500 replies to our survey. Thanks to all who have taken the time to complete the survey. There is a wealth of data and our initial analysis points to some very interesting results.

We need your help. We’d like to have 1000 replies. If you haven’t done so, please complete the survey at http://www.pdsa.org/survey/. Your identification information is optional. Only aggregate results will be published.

CIPRO, DOXYCYCLINE AND PLATELETS

With Cipro and Doxycycline in the news, many of us wonder what will happen to our platelets if we take these antibiotics. According to Harrison's Principles of Internal Medicine and the USPDI Drug Information for Healthcare professionals, Cipro is not on the list as a common inducer of thrombocytopenia. However, the 2001 PDR Nurse’s Drug Handbook does list GI bleeding and urethral bleeding among the many potential side-effects. 

The Food and Medications Interactions – 11th edition recommends avoiding milk, yogurt and caffeine when taking Cipro. The Herb-Drug Interaction Handbook suggests that fennel oil alters the absorption. For more information on Cipro see http://www.ciprousa.com/hcp.asp

Doxycycline is a type of tetracycline, a group of broad spectrum antibiotics. The 2001 PDR Nurse’s Drug Handbook lists thrombocytopenia and thrombocytopenic purpura among the side effects of tetracyclines. The Food and Medications Interactions, 11th edition recommends you avoid alcohol if you take doxycycline. The Herb-Drug Interaction Handbook suggests Goldenseal and Oregon Grape can reduce the absorption. For more information see: http://www.rxlist.com/cgi/generic/doxycyc.htm

ITP HERBAL TREATMENT

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Get Well International is a company with over 40 years of research in its products by medical doctors and master herbalists. Dr. Ba Hoang’s medical thesis was on ITP. His supplements Blood-Well and Restor-Immune for ITP have been used successfully for many years. A healthy balanced body produces normal platelet counts. Many users of this program report less bruising, more energy, and platelet increase within 2-3 weeks. It is very cost effective and has had almost no side effects like the normal drug therapies. Information and testimonials can be found at http://www.getwellinternational.com or leave a message at 1-888-522-4372.

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

This e-newsletter is a publication of The Platelet Disorder Support Association. The information in this newsletter is for educational purposes only. For advice on your unique medical condition, please consult a health care professional.

Contents:

•  PDSA Happenings
•  Ethanol-induced thrombocytopenia
•  Promising Research
•  NIH Funding
•  Holiday suggestions
•  ITP Herbal Treatment

PDSA HAPPENINGS

Newsletter:

We’re taking the Fall newsletter to the printer tomorrow and sending it next week. It is 16 pages, longer than any previous newsletter, thanks to our sponsors and volunteers.

The newsletter will include the following: Highlights from the ITP Conference 2001:Part 2, Lara’s Story: Using Traditional Chinese Medicine to Treat ITP – Part 2; Abstracts of Interest, Your Questions Answered, In the News, and more….Message from the President, Letters, Tip from the Platelet Buddy, Information about the conference….

Our newsletter is sent to everyone who contributes at least $25 per year to PDSA. For more information and to join PDSA go to http://www.pdsa.org/joinus.htm. You can join on-line or send a check or credit card number to PDSA, P.O. Box 61533, Potomac, MD 20859

Conference: 

Register Now! Our ITP Conference 2002 will be held at the San Diego Marriott Mission Valley, San Diego, CA, June 21-23, 2002. The cost is $75 for non-members and $65 for members. Register before March 31, 2002 and receive a $10 discount. The Friday evening meeting is an additional $15. You can register and find the latest conference information at http://www.pdsa.org/conference.htm. It will be an exciting time! 

Survey:

Dr. James Bussel, Buzz (our VP and survey statistician) and I met to review the preliminary results. We agreed there is tremendous promise to increase the knowledge about ITP treatments with the data we are collecting. We will do a short presentation at Dr. Robert McMillan’s ITP study group meeting at the ASH conference in early December.

We will remove the survey from the web site at the end of this year so we can analyze the results. If you haven’t done so, be sure to take the survey. Every answer counts. http://www.pdsa.org/survey/

ETHANOL-INDUCED THROMBOCYTOPENIA

In each issue, the Hem/Onc Today magazine presents a diagnostic quiz. In the November, 2001 issue they described a woman, heavy drinker, who came to her physician with a mouth full of petechiae, extensive bruising and a low platelet count. Sound familiar?

After many tests she was diagnosed with ethanol-induced thrombocytopenia. Her alcohol intake had suppressed her bone marrow function and she wasn’t making very many platelets.

According to the author, Franklin Bunn, MD, “The most common causes of decreased production of platelets include drugs, particular chemotherapeutic agents…, and toxins, the most common of which is ethanol.

For a list of substances that could cause problems for people with ITP see http://www.itppeople.com/warnings.htm

PROMISING RESEARCH

MacroGenics, a new company in Rockville, MD is developing a promising antibody therapy. “The antibody we're engineering has 10,000 times more potency compared to IVIg, claims MacroGenics' CEO and president Dr. Scott Koenig, based on animal studies. In addition, he says, the company's product presumably will be safer and cheaper than IVIg and may work in patients for whom IVIg fails. It probably will be administered as a shot, rather than as an intravenous infusion like IVIg, which can take several hours, he adds.”

For more information see: http://www.washtech.com/news/biotech/13648-1.html (Thanks to John for sending us this news item)

NIH FUNDING

Dr. Claude Lenfant, NHLBI Director stated that the NHLBI (National Heart Lung and Blood Institute) is operating under a continuing resolution until Congress approves the budget. Regarding the FY 2003 budget, Dr. Lenfant stated that President Bush has publicly committed to complete the plan to double the NIH budget that was initiated during the previous administration. For more information see: http://www.nhlbi.nih.gov/meetings/index.htm. 

(NHLBI is the institute at the NIH that funds ITP research)

HOLIDAY SUGGESTIONS

Want an unusual gift for the holidays? Shop the Platelet Store. We have T-shirts, tote bags, zip duffels, vegetable knives, personalized note cards, platelet buddies, and more. Just go to http://www.itppeople.com/store/. 

Do you shop at Amazon? If you do, just click to Amazon through our site(http://www.pdsa.org, http://www.itppeople.com/, or http://www.itppeople.com/store/) and PDSA will receive 5-15% of your purchase price. You pay no more and PDSA gets a welcome donation. Here’s our direct link: http://www.amazon.com/exec/obidos/redirect-home/itppeopleplace

Shop IGIVE. If you shop the gap on-line or LLBean, or any one of more than 200 affiliated stores, go to IGIVE first and PDSA will receive 5 – 15% of your purchase price. Links are on the same pages as above or go direct to: http://www.igive.com/PDSA

ITP HERBAL TREATMENT

(advertisement)

Get Well International is a company with over 40 years of research in its products by medical doctors and master herbalists. Dr. Ba Hoang’s medical thesis was on ITP. His supplements Blood-Well and Restor-Immune for ITP have been used successfully for many years. A healthy balanced body produces normal platelet counts. Many users of this program report less bruising, more energy, and platelet increase within 2-3 weeks. It is very cost effective and has had almost no side effects like the normal drug therapies. Information and testimonials can be found at http://www.getwellinternational.com or leave a message at 1-888-522-4372.

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

This e-newsletter is a publication of The Platelet Disorder Support Association. The information in this newsletter is for educational purposes only. For advice on your unique medical condition, please consult a health care professional.

Contents:

• Help ITP research - complete our survey
• New NIH Research initiative
• Prepare for the winter cold season
• Web site news update
• ITP Herbal Treatment

HELP ITP RESEARCH - COMLETE OUR SURVEY

The Platelet Disorder Support Association and Dr. James Bussel, MD of the Weill Medical Center of Cornell University are collaborating on an historic survey entitled "Survey of Non-Traditional Treatments of ITP." While most ITP research articles are based on findings of fewer than 100 patients, we hope to get input from more than 1,000 patients with ITP. This large amount of data will allow us to find patterns in treatments and treatment successes that have not been available to date. The survey results could lead to a follow-up study to gain verification of the most promising treatments.

To meet our goals we need your help. Please complete our survey at http://www.pdsa.org/survey/. Your name, address, and e-mail information are optional. No data will be shared with anyone outside of PDSA or those associated with Weill Medical Center. Only aggregate data will be published.

NEW NIH RESEARCH INITIATIVE

"…National Heart, Lung and Blood Institute (NHLBI) has released a Request for Applications (RFA) on a new Transfusion Medicine/Hemostasis Clinical Research Network available for review at http://grants.nih.gov/grants/guide/rfa-files/RFA-HL-02-001.html. ASH has long advocated for increased federal funding of clinical research initiatives in benign hematology and applauds the NHLBI's decision to support this area of research. The new NHLBI network will support up to sixteen core centers and a data-coordinating center to perform clinical trials to evaluate and compare novel and existing management strategies and products in the treatment of benign hematologic disorders in both children and adults. The total project period will be no longer than 10 years, with an anticipated award date of September 30, 2002…" (American Society of Hematology Press Release, September 25, 2001. http://www.hematology.org/news/press/press_0901.cfm)

ITP is one of the hematologic disorders targeted in this research initiative. We applaud the NIH for its increased support and stand ready to do anything we can to assist the ITP researchers who apply for these clinical research funds.

PREPARE FOR THE WINTER COLD SEASON

Many people with ITP notice a susceptibility to sinus infections. We’ve found an easy way to help prevent them, just rinse your nasal passages daily with a warm salt water solution. The salt rinse helps prevent bacteria from multiplying in the sinus passages. Your sinuses have a mini-immune system and they need to be open for this to function effectively.

Although you can rinse the sinuses by a number of methods, the best and most effective way is with a Neti pot, a specially shaped container that allows water to pour freely into the sinus cavities. You can purchase them in many health food stores, or from us in the Platelet Store, http://www.itppeople.com/store. The cost for the our plastic or ceramic versions is $17.95 plus shipping, reduced from $19.95.

Join me and hundreds of satisfied and healthier ITP people in using this simple preventative 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.

WEB SITE NEWS UPDATE

We’ve implemented a new way to update the ITP news section of our web site and make the back versions of the e-newsletters available or those who missed them. Each issue of our e-news will be posted to the news section of our web site: http://www.itppeople.com/itpnews.htm.

ITP HERBAL TREATMENT

(advertisement)

Get Well International is a company with over 40 years of research in its products by medical doctors and master herbalists. Dr. Ba Hoang’s medical thesis was on ITP. His supplements Blood-Well and Restor-Immune for ITP have been used successfully for many years. A healthy balanced body produces normal platelet counts. Many users of this program report less bruising, more energy, and platelet increase within 2-3 weeks. It is very cost effective and has had almost no side effects like the normal drug therapies. Information and testimonials can be found at http://www.getwellinternational.com or leave a message at 1-888-522-4372.

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

This newsletter is a publication of The Platelet Disorder Support Association. The information in this newsletter is for educational purposes only. For advice on your unique medical condition, please consult a health care professional.

Contents:

• ASH Meeting Information 
• New Levels of Membership
• Help us. Help others
• About our New E-mail Format
• Advertising with PDSA

ASH MEETING INFORMATION

The 43rd annual meeting of the American Society of Hematology (ASH) will be held at the Orange County Convention Center in Orlando, FL from December 7 - 11, 2001. The good news is that you don’t have to be a hematologist to attend.

On Friday, December 7, the "Third Annual Review of Immune Thrombocytopenic Purpura" will take place from 12:00 noon to 4:00 PM in the Rosen Centre Hotel, near the Convention Center. If the third program is anything like the first two, you can expect to see a very large room filled with eager attendees listening to presentations from some of the top ITP researchers.

Since this is a ‘Corporate Friday’ program it is open to all who are interested in attending. You don’t need to register for the conference or call ahead to attend this session. Just be there. The ITP review is sponsored by the Weill Medical College of Cornell University and supported through an unrestricted educational grant from Nabi. Keep in mind that the target audience is physicians.

There will be an education program on platelets during the regular session of the ASH meeting. It is chaired by Keith McCrae. MD, from Case Western Reserve University and includes his presentation on "Pregnancy-Associated Thrombocytopenia" as well as talks by James Bussel, MD, New York Presbyterian Hospital, on "Novel Approaches to Management of ITP:Results from Recent Trials", Pier Mannucci, MD, University of Milan, "Diagnostic and Pathophysiologic Significance of the VWF Protease in Thrombotic Microangiopathies", and Douglas Cines, MD, University of Pennsylvania on "Heparin-Induced Thrombocytopenia and Thrombosis: New Insights into Pathogenesis, Diagnosis, and Management". You need to register for the conference to attend this and other ASH education sessions.

The Platelet Disorder Support Association will have a booth at the meeting and representatives from PDSA will be attending these sessions. We will publish highlights from the meeting in an e-mail and print more information in our newsletter. We are pleased to be able to attend this meeting and share what we learn with our readers.

If you are planning to go to the Corporate Friday session or the entire meeting, please let us know via e-mail or call 1-87-Platelet. We have 2 passes to the exhibit floor we can share and the option of including more volunteers to staff our booth.

To find out more about the American Society of Hematology Meeting go to http://www.hematology.org

NEW LEVELS OF MEMBERSHIP

The PDSA Board of Directors has approved two new levels of memberships, Contributors at $100 and Associates at $250.00. Contributors will receive our newly printed PDSA Tote Bag in addition to all the benefits of our ‘Friends of PDSA’. Associates will receive a PDSA Zip Duffel in addition to all the benefits of being a Contributor. You can now contribute on-line in these additional categories at http://www.pdsa.org/joinus.htm.

Please consider upgrading your support to PDSA. We can do more with your help.

The Platelet Disorder Support Association is a 501 (c ) 3 organization.

All contributions are tax deductible to the fullest extent of the law.

HELP US. HELP OTHERS

Our thoughts continue to be with those who were touched by the tragic events on September 11. As the turmoil continues, we all want to give as much as we can to help those in need as we try to maintain the life we knew. In this spirit, the Platelet Disorder Support Association will donate 10% of all profits from the Platelet Store and memberships to the Red Cross Disaster Relief Fund.

NEW E-MAIL FORMAT

We’ve sure you’ve noticed the change in format from the other e-mails you have received from us. We’re standardizing our e-mails and adding some features we think you’ll appreciate, making them more like other e-newsletters.

Our plan is to send them every two weeks, on a Monday. In each, we want to include some helpful ITP information in addition to product and service announcements. We’ve also added advertisements. We’d appreciate any comments on this new format and timing. Just send them to news@pdsa.org.

ADVERTISING WITH PDSA

PDSA will now be accepting advertising in our newsletter and in these e-newsletter messages. We are doing this for several reasons. One, the obvious, advertising dollars allow us to do more. Our next newsletter will have more pages due to the generosity of our advertisers.

Another reason we are accepting advertising is that some companies contacted us and wanted us to help them tell you about their products and services. We feel these products could be beneficial to you and you would want to hear about them too. It was a good match and the right time for us. We will be accepting advertising on our web site soon.

If you or your company are interested in placing an ad with us, just call us at 1-87-Platelet or e-mail at pdsa@pdsa.org. The ads in our paper newsletter must pertain to ITP and wellness. This is a requirement to maintain our non-profit postal rate. We can be more flexible with the content of our e-newsletter and web site ads. However, we would like all of our advertising to be potentially beneficial to our readers.