Nearly everyone who gets SJS/TENS has moderate to serious problems with their eyes, and something that occurs right away is photophobia, or sensitivity to light.

When I had SJS at age 11, I was so light sensitive, especially in the morning, that I couldn’t tolerate the light in the bathroom or in the kitchen. Sunglasses provided little benefit, and going outdoors was something to fear and avoid. It took years for me to cope better, and I want to pass on to you the benefit of my learning experiences. For some people the pain is so bad that they become effectively crippled.

Why is this so?
My theory is that the nerves from the eye to the brain can handle just so much information. For normal people, bright light is translated into information to the brain, and is handled with no problem.

To view full article please: [click here]

The SJS Foundation needs your help. If you know a physician with experience in treating the aftermath of SJS please help us by adding their name and contact information to the physician list. We are looking for doctors in all fields. This information will assist other SJS victims with their recovery.

Please email us at sjsupport@aol.com add for SJS Physicians list in subject box.

We appreciate your participation in this project important project.

We now have support group facilitators in 8 states and 4 countries.

Patients receive encouragement by meeting others who have overcome SJS challenges like your own. Most patients have been told that they will never meet another person that has had Stevens Johnson Syndrome. We hope that more people will volunteer to support other SJS patients locally.

If you would like to volunteer to be a SJS Support Group Facilitator please download the support group application located at: [here]
and mail to:
Stevens Johnson Syndrome Foundation
PO BOX 350333
Westminster, CO 80035

If you have any questions please contact us at: (303) 635-1241 OR email us at: sjsupport@aol.com

Michigan residence can now be fitted for scleral lenses without traveling out of state. We are pleased to add Dr. Dalia K. Warner to the list of scleral lens providers.

Dr. Warner is an optometrist and director of the contact lens clinic at Michigan Cornea Consultants. Dr. Warner fits mini and full size Scleral lenses. She is originally from England where she studied under Ken Pullman and has seen SJS patients at Moorsfields Eye Hospital in London as well as patients in Michigan. She joins three well respected cornea surgeons; Dr. Steven Dunn, Dr. David Heidemann and Dr. Christopher Chow.

Michigan Corneal Consultants has three offices at the following locations:
29201 Telegraph Road,
Suite 101, Southfield,
Michigan 48034-7630
Phone: 248 350-1130

21000 E Twelve Mile Road,
Suite 103, St. Clair Shores,
Michigan 48081
Phone: 586 447-8939

19853 West Outer Drive,
Suite 102, Dearborn,
Michigan 48124
Phone: 313 565-6102

Please visit the following link for a scleral lens provider near you:
http://www.sjsupport.org/scleral.shtml

The Stevens Johnson Syndrome Foundation has surveyed 1137 SJS and TEN Patients. The Foundation receives calls each day regarding after effects. Many patients will suffer one or more life long disabling conditions as a result of SJS/TEN. Below is a list of results pertaining to residual side effects secondary to Stevens Johnson Syndrome and Toxic Epidermal Necrolysis.
To view full article please: [click here]

Once again the SJS Foundation is asking for your assistance. Each year we write to the United States Governors asking them to proclaim August SJS Awareness Month is their state. However many states want a letter from a local resident. Please help us by writing your state governor.

If you are a resident of another country we would like your help also. Please write to your appropriate government official. We would like to see August recognized world wide as SJS Awareness Month!

A sample letter is available on the Stevens Johnson Syndrome Foundation website at: [click here]

To access your governors address: National Governors Association