Stevens Johnson Syndrome Foundation
     Stevens Johnson Syndrome

June, 2006

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Surviving SJS Documentary

The documentary is now available to physicians and patients who want to learn more about the affects of Stevens Johnson Syndrome (SJS), Surviving SJS includes interviews with doctors and patients while focusing on the story of SJS survivor John Mowatt harrowing experience of contracting SJS from antibiotics taken following heart surgery and his treatment at the Grossman Burn Center in Sherman Oaks, Calif.

Surviving SJS is available in two versions; a 20 minute version for $29.95 which is recommend by the Stevens Johnson Syndrome Foundation and an expanded one hour version for $39.95. To purchase either film, contact Diane Cignoni at or call 323-854-3136

SJS Survey forms

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]

Sponsor an SJS 5K Walk/Run

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]

August is SJS Awareness Month!

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]

Mandatory Allergic Reaction
Reporting in America
Farrell, Anne

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]

Search Engine that donates!

Now there is a new way to help support the Stevens Johnson Syndrome Foundation just by searching the Internet with This is a search engine powered by yahoo. All you will need to do is go to 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 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!

Dental Problems as a result of SJS

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

How you can help the Stevens Johnson Syndrome Foundation

The Stevens Johnson Syndrome Foundation receives no government funding and our web site accepts no commercial sponsorship. It relies entirely on contributions. Make a donation in memory of someone, or to commemorate a holiday, birthday, wedding, or other special occasion. A tribute letter will be sent to the person(s) you designate and an acknowledgement letter will be sent to you. This letter serves as your tax receipt.

[ Click here ] to make your generous contribution to SJS Foundation..!!

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Articles or advertisements referring to specific programs, services and/or products do not constitute endorsement by the Stevens Johnson Syndrome Foundation. Articles involving medical aspects of SJS are not intended to be medical advice and readers are cautioned not to make any changes in their treatment based in information without consulting with a physician.
Information for Donors: The Stevens Johnson Syndrome Foundation is a 501 (C) (3) tax-expempt corporation. All donations to the SJS Foundation are tax-deductible. [ Click here ] for Tax information.
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