Stevens Johnson Syndrome Foundation
     Stevens Johnson Syndrome

January, 2005

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2005 the year of SJS Awareness

As most of you are aware SJS has been in the news a great deal. This is a a tremendous opportunity for all of us and we need to take advantage of it. The SJS Foundation has received numerous calls and emails from parents with questions and concerns about SJS. These are parents that DO NOT HAVE A CHILD WITH SJS! The public is visiting our website. They are educating themselves!

People are finding out about Stevens Johnson Syndrome before it finds someone they love!

Not the way most of us found out. They're are not standing at the bedside of their loved one, praying, crying and desperately trying to understand what has just happened.

We need to continue to educate the public, even after the media attention dies down. You can help by visiting our website. Print the SJS Fact sheet and take it to your doctors. Hand it out to your children's schools. Email the link to the SJS Foundation website: to 10 of your friends, ask them to email it to 10 of their friends. Lets not lose the momentum. Together, we can make a difference. There are times when medications are definitely needed and beneficial, but through public awareness and education we can help the future SJS victims to receive a quicker diagnosis, and a proper treatment plan.

Children's Ibuprofen products in the News

As most of you are aware a lawsuit has been filed against the manufacturer of children's motrin in the case of a little girl that went blind.

The SJS Foundation has written to the FDA about Stevens Johnson Syndrome and children's ibuprofen products for over a year. We were told they have not seen an increase in SJS cases. The SJS Foundation has received reports of 2 new cases of SJS already this year to these products in children. We are only 2 weeks into the new year.

There have been more reported cases of SJS to ibuprofen then to acetaminophen. We are all taught not to give children aspirin due to the risk of Reye Syndrome. Yet there is no warning of SJS to the public in NSAIDS for children.

How fast do you really need a fever to come down? A fever is sign of an infection. Many doctors don't even consider a fever a concern if its under 101. We as consumers deserve to be informed of the risk of dangerous sideeffects in over the counter drugs. When this medication was by prescription it carried the warning of SJS, yet when it went over the counter, readily available to all parents the warning was lifted. If you have a child that had SJS to ibuprofen, we urge you to complete the FDA online reporting form and the SJS Foundations Survey Form.

To view the response from the Food and Drug Administration please [ click here ]

Media Interviews

Since October 2004, the SJS Foundation has had the honor of being interviewed by the following news agencies. We would like to thank them for helping spread the word about Stevens Johnson Syndrome.

  • The New York Times
  • Washington Post
  • News Day New Paper, NY
  • The San Jose Mercury News
  • The Killeen Daily Herald
  • Reuters News Wire
  • Dow Jones News Wire
  • The Beaver County Times, Beaver, PA
  • Wall Street Journal

SJS Patients and the Media

The SJS Foundation has been receiving numerous calls and emails from the media looking for SJS patients and families to interview. If you would like to be included in a future interview, please contact us by email at
Please add subject line : SJS INTERVIEW

Include the following information:

  • Name
  • Phone number
  • Address
  • Medication
  • Year(s) of SJS or TEN
  • Sideeffects
Also, if you have photo's it is helpful.
Thank you for your help

SJS Survey Form

If you have not completed our survey form in the past we are urging you to do so now. We need hard facts. Since the initiation of the survey form last year we have had 222 patients complete the form. The FDA's reporting system is not accurate. The only way we will get SJS out is the open is to prove that it is not rare. Not only will completing the survey help in that aspect but we will be able to accurately track certain drugs that have a higher incidence of SJS and lobby for warning labels. Your assistance in this project is greatly appreciated.
[ Click here ] to go the SJS Survey Form

SJS Awareness Month in your State

Once again it's time to write to your governor requesting that August be named SJS Awareness Month in your State. We have attached a link to a template letter to help you get started.

Your assistance as always is deeply appreciated.
[ Template Letter, Word format ], [ Template Letter, HTML format ]

New Board Medical Advisor

It is our honor to welcome Dr. Janis Cotter of Parkway Sclerals to our medical advisory board. Dr. Cotter has been fitting gas permeable scleral contact lenses to diseased eyes for almost 20 years received her doctorate in optometry in 1985 from the New England College of Optometry. [ More ].

The SJS Foundation also welcomes: Dr. Scheffer Tseng to our Medical Advisory Board!
Dr. Tseng serves as Medical Director of Ocular Surface Center, providing the state-of-art to patients suffering from Stevens Johnson Syndrome and Toxic Epidermal Necrolysis. [ More ].

Ocular Damage and SJS/TEN
by, Scheffer C. G. Tseng, M.D. PHD

SJS, especially when associated with TENS, is a horrible disease affecting the eye. As the medical director of Ocular Surface Center in Miami, Florida, I have a precious opportunity of seeing and taking care of quite a few patients in the last three years after I left the Bascom Palmer Eye Institute, University of Miami. The following are our progresses made and I would like to share them with you: [ More ]

New Board of Directors

It is our pleasure to name Mr. Tushar Khatri of Lafayette, Colorado, and Mr. Justin Hebert of Broomfield, Colorado to the SJS Foundation Board of Directors. Tushar and Justin have volunteered many times for the Foundation distributing SJS Fact Sheets to the public and have also helped with the SJS fundraisers. Tushar has a background in computers & management and Justin is presently working towards a degree in Nursing.

New and Improved SJS Foundation Website

We are very excited to present our new and improved website. Special thanks to our wonderful webmaster, Amit Khatri and content provider Jean McCawley (- Founder of SJS Foundation) for their hard work. Please take a few minutes to visit our website and see the changes and new information. Many people are contacting us to be added to the prayer list. We have an updated news section with all the latest SJS news in the media.

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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