Stevens Johnson Syndrome Foundation
     Stevens Johnson Syndrome

May, 2009

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SJS online survey

If you haven't already completed the SJS online survey form would you mind please taking a few minutes to do so? This is very important in tracking the cases to specific medications. It allows us to see if there is in an increase in a particular drug, age group or area.

If you've already completed the form in the past thank you very much. You only need to complete it one time and it stays in our data base. We appreciate your time!

Click here to complete the form: SJS Foundation online survey

My Story
By, John Hornberger

My story begins in September 2005. My name is John Hornberger age 50 at the time. I was clearing land for a new home when I was stricken. I thought I was getting poison ivy so I didn’t go to the doctors or ER. This rash had gone on for several days, while I was working at the land I really felt sick. I went to my sister’s house only several hundred feet away. She took one look at me and said she was taking me to the hospital. The doctor on duty in the ER said...[view full story]

By, Patti Davison

My name is Patti Davison. I am one of the Colorado Facilitators. My son Danny had SJS a little more than a year ago. He is my hero!!!

This article is not about Danny though. He will be interviewed on Julie's page. It is about what I learned and what I continue to learn about prescription drugs on a daily basis. And the truth is I have become a wellness advocate and educator. And that is because I not only want to, but I believe I have to.

To view full article please: [click here]

Alexandria Jane Reed!

The Stevens Johnson Syndrome Foundation congratulates Alexandria "Alley" Reed on her graduation from high school. Alley choose Stevens Johnson Syndrome as her senior project. Alley was deeply affected when her Uncle John suffered from TEN. She used her senior project as an opportunity to educate her teachers and classmates about this devastating syndrome. Alley plans to attend Bloomsberg University in Bloomsberg, PA and major in special education. Congratulations Alley we are so proud of you!

Thank you ABC

The Stevens Johnson Syndrome Foundation would like to thank Extreme Makeover American Dream Edition and Denver 7 news for their generous donations. Thank you ABC for helping the SJS Foundation during these hard economic times!

The Ketogenic Diet

As many of you are aware, Julie's SJS was caused by Phenobarbital to control pediatric epilepsy. If only we had been offered the Ketogenic diet first. Julie started on the diet after she suffered SJS which evolved into TEN and 78 grandmal seizures the longest lasting 50 minutes. For those of you with children with epilepsy please take a few minutes to watch as Meryl Streep explains the Ketogenic Diet. For us it was a lifesaver!

YouTube - Meryl Streep introduces the ketogenic diet

It's that time of year again!

August is SJS Awareness month and your help is greatly needed. Please take the time to write to your states governor requesting a proclamation declaring August as Stevens Johnson Syndrome Awareness month!

A sample proclamation letter is available on our website at here

Support groups!

We would like to thank our support group facilitators for volunteering to help raise awareness of SJS and for the support you have given so many. We now have 34 facilitators in 19 states and 8 countries.

To our friends in Mexico, please welcome Veronica Ferreyro Salazar and Maria Teresa González Méndez. These ladies both have children that have suffered from SJS and TEN. They recently developed a Stevens Johnson Syndrome website in Spanish and also translated the SJS Fact Sheet! This has been a Godsend! You can access the fact sheet from their site at : or at
Thank you ladies!

We also welcome Cindy McNally in Michigan and Cheri O'Neill in Minnesota. Cheri has started an SJS support network that we are all greatly enjoying.

Here you can share stories, support and pictures. This is a great group! Also please join the SJS Foundations Online support group

Don't forget Canada, and the wonderful work of Helen Milne. Please visit her blog.


Prayers needed:
Please take some time to visit the SJS website's prayer list. We have many new patients that need your well wishes.

SJS Kids Support Website:
Please visit This is a great site to explain Stevens Johnson Syndrome to little ones. There is also a picture page of SJS kids and another page for SJS big kids. If you would like to add a your picture or your child please email and reference for SJS KIDS Page in the subject line. We look forward to seeing you!

How you can help SJS Foundation?

Now you can donate your vehicle to help the SJS Foundation Through Vehicles for charity, the SJS Foundation will receive a check once the car is repaired and sold at auction. Your donation through vehicles for charity is tax deductible. [ Click here ] for more information on how you can help.

If the information contained in our website was helpful to you, please be aware that it has been made available for public access strictly through volunteer effort and funding. The Stevens Johnson Syndrome Foundation is a 501(c)(3) non-profit organization dedicated to promoting public awareness to adverse drug reactions as well as to provide immediate information regarding treatment of those suffering from this devastating affliction. Please help us keep this website running. Your tax-deductible donations will help us to continue this good work.
[ Click here ] to make your generous contribution to SJS Foundation..!!

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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