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Stevens Johnson Syndrome Foundation: Drug Reaction, not Skin Disease, Killed Manute Bol
The non-profit organization dedicated to spreading awarness of Stevens Johnson Syndrome (SJS) and providing
support to the families of SJS patients warns of rampant misinformation in the media coverage of Manute Bol's death.
(PRNewsChannel) / June 22, 2010 / DENVER, Colo. / For many, the passing of
humanitarian and legendary basketball player Manute Bol was the first time they
had heard of Stevens Johnson Syndrome (SJS). For others, it was a reminder of
the daily challenges they must overcome due to their personal experience with
this adverse drug reaction.
Adverse drug reactions, like Stevens Johnson Syndrome (SJS), are the
fourth-leading cause of death in the United States. Nearly any medication,
including over-the-counter products such as ibuprofen, can cause SJS. The
syndrome is not contagious and cannot be caught.
"Anyone, at any age, can contract Stevens Johnson Syndrome," says Jean McCawley,
the founder of the Stevens Johnson Syndrome Foundation. "The biggest issue we
see is a lack of awareness about adverse drug reactions. Even with the
unfortunate passing of Mr. Bol, there have been many incorrect statements made
about SJS."
The Stevens Johnson Syndrome Foundation is a non-profit organization dedicated
to providing both the general public and medical community with information
about SJS, while offering support to the families of SJS patients. While recent
news reports have stated that SJS is an extremely rare reaction, McCawley says
it is difficult for anyone to make that statement.
"There is no mandatory reporting for allergic drug reactions so there's no way
to know how many people contract SJS each year," she says. "Some weeks, I speak
to five patients a day; sometimes it's two a day. It's really hard to tell
without mandatory reporting."
Those interested in supporting the SJS Foundation should join them in their
quest to encourage mandatory reporting for all severe adverse drug reactions.
Send a letter to the Food and Drug Administration (10903 New Hampshire Ave,
Silver Spring, MD 20993-0002) requesting mandatory reporting for all severe
adverse drug reactions.
August is Stevens Johnson Syndrome Awareness Month. For more information about
Stevens Johnson Syndrome, please visit www.sjsupport.org or contact
(303)635-1241.
Contact:
Jean McCawley
Tel: 303 635 1241
Email: sjsupport@aol.com
Web: www.SJSupport.org
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