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A Health Information Management professional, I survived a life-threatening emergency with information that only a person of my professional experience would know. And I’m sharing it!

Thursday, July 3, 2008

Taming Marfan Syndrome and How to Join Related Clinical Trials

1 Tamuz 5768

Marfan Syndrome is a genetic disease that affected former US president Abraham Lincoln. One of the problems with this condition is an enlarged part of the heart called the Aorta. Enlarged aortas can kill people who have them.

The GOOD NEWS is that a drug commonly used to treat high blood pressure has helped to slow down that aortic enlargement in some children with Marfan's. The drug is called Losartan.

Many medical specialists are involved with associated research into this promising treatment, including:

Ronald Lacro, M.D., director of the cardiovascular genetics clinic at Children's Hospital in Boston, Massachusetts USA

Harry Dietz, M.D., a professor in the McKusick-Nathans Institute of Genetic Medicine. Dietz is Director of the William S. Smilow Center for Marfan Syndrome Research at Johns Hopkins Hospital.

Other specialists work with the Pediatric Heart Network of the National Heart, Lung and Blood Institute at the National Institutes of Health. PHN - NHLBI, by the way, approved and launched a large, multicenter clinical trial of losartan for Marfan syndrome.

CLICK HERE to find out if you can join the clinical trials mentioned above (the site is undergoing maintenance so try again later if you can't access it right now).

CLICK HERE to learn about the National Marfan Syndrome Organization.

CLICK HERE to find New England Journal of Medicine articles about Marfan Syndrome.


It's My Crisis! And I'll Cry if I Need To: A Life Book that Helps You to Dry Your Tears and to Cope with a Medical Challenge

to learn about how to get in on other clinical trials, how to get free or discounted medication and medical appliances, and so much more helpful information.

The book can save you hours of aggravation and prevent useless searches in wrong directions. I wrote it in order to quickly direct ill people to the resources they need.


To Your Ever-improving Health,

Yocheved Golani
Coping with a Medical Crisis?
Make the Changes You Need in Your Life.

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