Platelet E-News – July 1, 2002

This e-newsletter is a bi-weekly 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:

  • New ITP clinical trial - daclizumab
  • Positive thoughts can help your immune system
  • ITP conference tapes and CD's
  • Gold induced thrombocytopenia - new finding
  • If you have chronic ITP - did you know you have treatment options (advertisement)

 

NEW ITP CLINICAL TRIAL - DACLIZUMAB

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/

ITP CONFERENCE 2002 TAPES AND CD'S

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.

GOLD INDUCED THROMBOCYTOPENIA - NEW FINDING

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

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