On the morning of May 19th, 1993, I came downstairs after getting ready to go to school. My sister Mollie was sitting on the couch waiting for my mother to give her some medicine (children's Advil). My parents thought she had the common flu. She looked pale and about to throw up. Not wanting to go to school like any good kid I said to her "You're lucky." Striking back she said "No, I'm not." Looking back on it I wish I hadn't spoken those words. A short time later her lips turned purple and skin bleach white. What was to come I consider the end of my sisters life.

At the hospital they tried taking her blood but were unable to because it was too thick. The nurse gave her more childrens advil which in time made her condition worse. In a short while she developed blisters and rashes all over her body. She was put in the Intensive Care Unit (ICU) where there were countless machines keeping her alive. After about a weeks time she was put in the burn unit as if she had burns from a fire, but the allergic reaction was the cause of her third degree burns. Later that night my mother was sitting with my sister listening to the reassuring beep...beep...beep of the heart rate monitor. My sisters body let go of it's grip on life. Hearing the flat line my mother pressed the red emergency call button that she had only glanced at hoping she would never have to touch it. Doctors and nurses rushed in to revive her. Back and forth she went from the burn unit to ICU. As soon as her condition improved it worsened. [ more... ]

Betty and Clarke Guilliams just returned from a trip to New York, where they filmed a segment for the Montel Show. Betty had TENS in 1998. Her story appeared in our December newsletter. We are very happy that her story is going to air soon. Special thanks to Betty, Clarke and the Montel Show for spreading the word about SJS/TEN.

So far 2005 had brought quite a bit of awareness to Stevens Johnson Syndrome. I am sure many of you have been following the news regarding NSAIDS. Recently Bextra was taken off the market due to an increase in adverse events in particular a severe skin reaction. SEVERE SKIN REACTION???

This year the amount of Stevens Johnson Syndrome cases has escalated. We have seen a huge increase in NSAIDS in adults and children. It was my honor to travel to Maryland this February to join 7 year old Sabrina Brierton Johnson and her attorney Browne Greene, of Green, Broillet & Wheeler of Santa Moncia, CA, along with Joan Claybrook of Public Citizen for a press conference held during the FDA Hearings regarding the joint meeting of the arthritis advisory committee and the drug and safety Risk Advisory Management Committee.

We discussed an increase in SJS among children to ibuprofen products. Little Sabrina was the first citizen to testify at these hearings asking that the warning label of Stevens Johnson Syndrome be returned to these products. Time was limited to a 2 minute statement. If you went over your time limit the microphone would be shut off. Sabrina through her Mother Joan, made great use of her 2 minutes. Great job Sabrina!

The Stevens Johnson Syndrome Foundation submitted written testimony to the panel. Our statement was entered into the docket and can be viewed at the following link: [ Click here ]

Since the hearings we are relieved to see the FDA finally moving in the right direction by placing warnings on over the counter NSAIDS. It is our hope it will clearly state Stevens Johnson Syndrome and not risk of serious skin reactions. We have also asked the FDA to implement a National Reporting system to get an accurate count of the incidences of SJS/TEN. How can anyone say that SJS/TEN are rare when there is no reporting system in place? We will continue to update you on our progress.

Related story: [ Click here ]

Welcome Maralee Bilotta to the SJS Board of Directors. Maralee is the Transient Sales Manager at the Millennium UN Plaza Hotel at United Nations Plaza. She is driven to spread the word about SJS and also participated in the SJS Candle Fundraiser. We are very happy to add her to our board. Thank you Maralee!

Just a reminder, with August quickly approaching, we are asking once again for volunteers to write to your local Governor requesting a proclamation for SJS Awareness Month. Most states require a letter from a resident. Please help us spread the word nation wide. Your help is greatly appreciated! Click here for a sample letter: SJS Sample Governor letter

You can locate your Governors address through the following link: National Governors Association

Please join us for:
The First Annual Stevens Johnson Syndrome 5K Walk/Run

Fundraising Event to Benefit the Stevens Johnson Syndrome Foundation
August 13, 2005
Westminster City Park Promenade

( Additional Donations are Greatly Appreciated and Needed click here )

[ Click here ] to complete registration form: The First Annual Stevens Johnson Syndrome 5K Walk

For more information contact the SJS Foundation at 303 635-1241 email: sjsupport@sjsupport.org

[ Click here ] for the list of hotels located in the Westminster area.

A team of researchers from Taiwan’s Academia Sinica has recently discovered 2 genetic markers (variations) among Chinese SJS patients whose SJS was from Tegretol or Allopurinol. They are now in the process of developing an inexpensive test, so (Chinese) people could be tested for these markers BEFORE they take these 2 drugs, in order to avoid getting SJS in the first place!

Now the researchers will be turning their attention toward finding genetic markers among all ethnic groups, for these and other drugs that commonly cause SJS/TEN. This is not an overnight process, but ultimately has the potential of deterring people from taking the drugs that would cause them to develop SJS/TEN!

If you are able to participate in this research please call Donna J. Nelson at 641-472-9994, or email her at djnelson3@gmail.com. All DNA and information is kept in the strictest privacy, and used only for this specific research. Academia Sinica is an academic/research institution. Thanks to Jean for helping with this!