Stevens Johnson Syndrome Foundation
     Stevens Johnson Syndrome
Foundation

 
     Newsletter
December, 2007

  
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Happy Holiday's..!!

Wishing you and your family a Happy Holiday Season!
May the beauty of the Holiday Season be with you and yours throughout the year!


Elizabeth Boxer

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]

SJS Awareness Presentations

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 parentís 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. Weíve been asked to return to the North Denver-Metro Association again in the spring of 2008.

Help the SJS Foundation

With the Holidayís 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]

In case you missed it!

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.

SJS Support Group Facilitators

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
We are still in need of volunteers worldwide. If you would like to be a support group facilitator please download and complete the facilitator application located on our website: [click here]

The Foundation will provide your contact information on our website so interested parties may contact you directly. Facilitators are not to give medical advice. If asked for medical advice please refer the patient back to their healthcare provider

SJS Patient Tips

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.

International Serious Adverse
Events Consortium

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]


Bob & Jennifer McMillen visit SJS Foundation

This year it was our pleasure to meet Robert McMillen and his lovely daughter Jennifer. Bob was helping Jennifer move across country to attend college when they made a detour through Colorado. I am happy to announce he is our new support group facilitator for the state of Oregon. Bob had SJS as a child and had never met another SJS patient until his visit to Denver. He has since met several other survivors. Although Bob has his share of side effects from Stevens Johnson Syndrome he still has a positive outlook on life. He has researched SJS treatments and draws on his own experience to help SJS patients and their families. Please contact him if you are in his area. His email is Bob@alltech1.com

Bob is president of Alltech1 a computer technical service provider. He and his partner Andy Young also have a radio show on KUIK Sunday mornings at 9 in Portland, and KNEW in San Francisco Sunday evenings at 8 where they discuss news in technology. You can read about Bob and Jenís adventure across the west at http://www.xanga.com/mcmillentrip or visit his company website at: http://alltech1.com

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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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