SJS Survey forms
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As of April 11, 2006 the Stevens Johnson Syndrome Foundation now has 650 completed online surveys. After reviewing the data we have concluded that more females have been afflicted with SJS then male. Almost any medication including over the counter ibuprofen products can trigger SJS.
59 cases were to over the counter ibuprofen, these products are readily available to the public without prescription and carry no warning of SJS.
71 cases were anticonvulsant drugs. Of the 71, 36 cases were to Lamotrigine also known as (Lamictal). This is an anticonvulsants drug being used to treat bipolar disorder. It is not recommended for children under the age of 16 as it carries a black box warning of Stevens Johnson Syndrome and a higher incidence of SJS to this drug has been reported in children. [more]
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Sponsor an SJS 5K Walk/Run
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Please help raise awareness into the signs of Stevens Johnson Syndrome, by sponsoring a 5K walk/run in your area. SJS Walk
Buttons are available through [click here]
Other walk items include t-shirts, caps and tote bags. You
can also download the SJS Fact Sheet for printing by
visiting the SJS Website link at: [click here]
Please copy and distribute them to your walk participants. [more]
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August is SJS Awareness Month!
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Your help is needed. As many of you are probably aware, August is Stevens Johnson Syndrome Awareness Month. Once more we are calling on you to help get the word out about SJS. We need volunteers to write to your local governor on behalf of the SJS Foundation, requesting a state proclamation, declaring August as SJS Awareness Month.
Each year we write to all 50 states and each year we have had several new states join us. However, many states will only issue a proclamation if they receive a letter from a resident of their state. Your assistance is greatly appreciated.
To view a sample letter please visit [click here]
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Mandatory Allergic Reaction Reporting in America
Farrell, Anne
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Two definitions of the word rare may be found in the Merriam Webster dictionary. 2 a : marked by unusual quality, merit, or appeal :and 3 : seldom occurring or found. At age twelve, Molly Claybaugh fit these characteristics. A tap dancer, Molly auditioned among hundreds and was one of the few chosen to participate in the opening ceremony of the 1996 Olympic Games and was also selected as a contestant for Show Stoppers national dance competition. Just two weeks before Molly was scheduled to leave she became ill with a fever and the doctor prescribed children's Advil to bring it down. Within eight hours of receiving the drug Molly was diagnosed with Stevens Johnson Syndrome (SJS), a rare, allergic drug reaction. Today as a result of her battle with SJS, Molly is blind, paraplegic, and living on a feeding tube. [more]
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Search Engine that donates!
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Now there is a new way to help support the Stevens Johnson Syndrome Foundation
just by searching the Internet with goodsearch.com. This is a search engine powered
by yahoo. All you will need to do is go to www.goodsearch.com and identify Stevens
Johnson Syndrome Foundation as your chosen charity. Each time you conduct a search
the Stevens Johnson Syndrome Foundation will receive 1 cent. There is no charge to you!
Every time you search we get pennies from goodsearch.com and those pennies add up!
So help support the Stevens Johnson Syndrome Foundation while your working or doing homework. Tell your friends and family too! Your support as always is appreciated!
www.goodsearch.com
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Dental Problems as a result of SJS
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Often we have had reports from SJS patients complaining of loss of enamel
on their teeth. If you have experienced similar problems since SJS please
contact the SJS Foundation. We are compiling information on SJS side-effects.
We have also had several reports of children that had SJS before age 5 that
are missing permanent teeth under their baby teeth. Dentists have told us this
is genetic. It seems more than coincidence that we have several children that
had SJS as infants that have this same condition. If your SJS child has missing permanent
teeth please contact us at sjsupport@aol.com
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