In August 2006, 10 year old, Elizabeth Boxer suffered toxic epidermal Necrolysis. "Lizzie", as she is affectionately known by family and friends, was treated at Connecticut Children's Medical Center, where she made a remarkable recovery!
As the one year anniversary of her battle with TEN approached, instead of dwelling on bad memories, she decided to focus on raising awareness of SJS and TEN. After all she had been through this outgoing young lady with support of her family wrote a letter to the honorable Governor Jodi Rell asking her to proclaim August, Stevens Johnson Syndrome Awareness Month in Connecticut.

To view full article please: [click here]

This past March we were invited to the North Denver-Metro Daycare Association, to give a presentation on Stevens Johnson Syndrome. Many day care providers have parent’s permission to administer medications to children in their care.

When asked how many of you give your children over the counter ibuprofen products, almost everyone raised their hand. They were shocked when they found out that these products were also implicated in SJS. Everyone was extremely receptive to us and asked so many questions that we ran past our scheduled time. A few days later we received a call from the Broomfield, Colorado Daycare Association. We were asked to visit them also as they had received numerous calls regarding our presentation.

We arranged to see them in July and they too were happy to find out about Stevens Johnson Syndrome through education rather then first hand as most of us have. We’ve been asked to return to the North Denver-Metro Association again in the spring of 2008.

With the Holiday’s approaching please remember if you shop online please shop through igive.com Help the Stevens Johnson Syndrome Foundation cause for free! At over 680 brand name stores, a portion of each online purchase is donated to the Stevens Johnson Syndrome Foundation. [Click here]

If you missed the Montel Williams SJS follow up story which aired in June 2007 It can be viewed at the following link http://www.avimedi.net/en/video.html This website is run by support group facilitator Edgard Devaux of France. There is another video above the Montel show.

We are pleased to announce the following new Support group facilitators.

• Robert McMillen of Beaverton, OR
• John Hornberger , Central Pennsylvania's Susquehanna Valley
• Tellis (Ted) LaMar Jr , Salem,Va
• Marla Daniel, Michigan
• Donna Pittman, Oklahoma
• Grace Adley , Connecticut

My name is Rita Kremper, an SJS patient. I would like to help (or give some advice) for those SJS patients who use steroid drops constantly. I would like you to draw your attention to the danger of steroids. I think in some cases there is no choice but to use them, but I am sure that there are a lot of patients who could find an alternative solution. Using soft contact lenses for example is much better therapy for the constant eye irritation.

Everyone who use steroids must check eye pressure every two months, visual field and OTC (that measure the thickness of eye nerve) every year. These examinations together can show correctly beginning glaucoma.

Unfortunately, I missed these ordinary check ups and now I have glaucoma. Now I can live without steroids, although I thought for 20 years I cannot stop using them. So, ordinary eye pressure, visual field and OTC examinations are extremely important.

On September 27, 2007 seven pharmaceutical companies announced they have formed the International Serious Adverse Events Consortium. The results from Their first study will be released in about a year which will include Stevens Johnson Syndrome. The article states they have DNA samples from at least one pharmaceutical firm on Stevens-Johnson Syndrome and a related skin condition known as toxic epidermal necrolysis. There has been much controversy and speculation as to the agenda of this group within the SJS support group communities, with good reason! Below is the link to the article that appeared In the Wall Street Journal, and a response from Wyatt Buchanan, SJS patient. The SJS Foundation has not been contacted by the consortium.

To view full article please: [click here]