The Stevens Johnson Syndrome Foundation (www.sjsupport.org) is pleased to announce the launch of SJS Kids Support website which was designed and created by 14-year old Julie McCawley, a victim of Stevens Johnson Syndrome. The purpose of her website is to educate the public about Stevens Johnson Syndrome (SJS) from a child's point of view.

Please visit the website at www.sjskidssupport.org

The Stevens Johnson Syndrome Foundation (The Julie Foundation For Allergic Drug Reactions) a non-profit organization based in Westminster Colorado, was founded in 1994 by Jean Farrell McCawley after her 11 month old daughter Julie contracted SJS from the anti - seizure drug Phenobarbital .

The primary function of the foundation is to bring public awareness to this devastating and life threatening illness.

To view full article please: [click here]

We currently have 23 facilitators in the United States and 7 including Canada and Europe. We are so thankful to our volunteers! The world is a big place, and if you have time we really need your help!

The SJS Foundation would like to thank our volunteer support group facilitators for their wonderful support for SJS victims and their families.

USA
• Dawn Bundick, Alaska
• Debra Moulton, Arkansas
• Jean McCawley, Colorado
• Grace Adley, Connecticut
• Sonia Francis-Berges, Florida
• April Robinson, Georgia
• Tikeenia Campbell White, Georgia
• Nichole Willis, Kansas
• Jami L. Klein, Michigan
• Marla Daniel, Nevada
• Regina Adamousky, New Jersey
• Gina Brancato, New York
• Mary J Quick, North Carolina
• Becky Lucas, Ohio
• Donna Pittman, Oklahoma
• Robert McMillen, Oregon
• Christine Ballentine, Pennsylvania
• John Hornberger, Pannsylvania
• Pam Shields, South Carolina
• Marian Guerra, Tennessee
• Mary (Katie) Niemeyer, Texas
• Tellis (Ted) LaMar Jr, Virginia
• Deborah Bareika, Virginia

Canada
• Helen Milne,Canada

Europe
• Edgard Devaux, France
• Pieter Hoeberichts, Holland
• Zora, Italy
• Carol Kerr, Scotland
• Elisabeth, Sweden
• Susie Orme, United Kingdom

Help raise awareness of Stevens Johnson Syndrome by shopping at the SJS awareness shop located at www.cafepress.com/sjsupport

New items and designs have been added!

This support group is to help those who have lost a friend or loved one to SJS/TEN. A place to share your story and express feelings, knowing that others will be understanding, and supportive.

We ask that only those persons suffering a loss join this group. [Click here] to visit.

My name is Helen Milne and I am the proud mother of Ian, a 10 year old boy who had TEN's at age 3. Like every other parent of a child who has suffered a Stevens Johnson Syndrome reaction, every second of that period is burned into my brain forever. We too had never heard of this before, hence why the awareness drive is so important and I would urge you to take any opportunity to educate people as you go about your day to day.

Ian's story is similar to others in many ways in terms of the first presentation of his symptoms, misdiagnoses as chicken pox then hand foot and mouth disease, complete lack of proactive care and finally after 5 days of agony he was transferred to a burn unit. Within two days he was moved from the burn unit to Paediatric Intensive Care Unit. As soon as Ian was moved to PICU we were asked to leave the room for about 30 minutes and when we came back later, Ian had fallen into a coma and was wrapped from head to toe like a mummy - for any mother this sounds like a nightmare scenario, but in a strangely surreal moment my reaction was "Thank God they have stopped the pain!". It is this solitary moment that reminds me every day that Stevens Johnson Syndrome is an agonizing ordeal and very often pain management is overlooked in the initial period. It is one of the most inhumane experiences that a human being can have. Ian's eyes were very badly affected and he lost skin over 87% of his body. We nearly lost him on three separate occasions but thankfully he pulled through. As you are probably aware, too many SJS patients do not survive, and it was with this knowledge that we gratefully took him home, thinking it was all behind us with no idea that our lives were forever changed and a round of never ending battles was about to begin.

To view full article please: [click here]

The SJS Foundation would like thank our wonderful Swedish support group facilitator for creating free SJS graphics for download.

[Click here] to view free SJS graphic downloads.

My daughter Julie was only 11 months old when she was stricken with SJS. I remember how difficult it was to find sunglasses that would stay on her little face. I only wish Baby Banz were available then! If you have a little one that suffers photophobia please check out their website. They also have products for adults! http://usa.babybanz.com/

Coupon code: SJSORG good for 10% off all purchase at our online store