Over the past 11 years the Stevens Johnson Syndrome Foundation has strived to promote SJS awareness. We’ve printed fact sheets, brochures, issued press releases and interviewed with local news agencies in attempts to spread the word. We’ve worked at local fairs handing out fact sheets only to find them thrown in trash cans and littering fields. We’ve been turned down for proclamations for SJS Awareness month, ignored off by government agencies and foundations for funding into research, all due to the “rare word”!

Most physicians are taught they will never see an SJS case in their entire medical career. Thousands of SJS victims go misdiagnosed suffering horrific side effects due to untimely treatment. Many lose their battle due to the lack of knowledge of health care providers and public awareness. The SJS prayer list continues to grow as more people fall victim to this nightmare. [more]

To view a slide show of the event please: [click here]

All my life, I always looked at my cup as literally empty. I do have a great life, not perfect, not pain free, and not without baggage of just plain old living experiences, life throws our way.

I have had so many things go wrong with my life. But this holiday season is a time to be thankful. This sounds so clich, however when I have done the worst suffering in my life when I got TEN, it truly gave me one of the best life's that I would have never dreamed that could happen. [more]

Hello,
I just wanted to share this in case other SJS patients could benefit from it. My eye doctor put me on large doses of Flax seed oil capsules each day. It is supposed to help keep eyes more lubricated, and aid in tear production, and help decrease inflammation. I take 3,600 mg.(or 3 capsules 1,200 mg each) 2-3 times per day (am/noon if needed PM). I notice a big difference! Especially if I don't take it for a day or two. My doctor. said it's all omega-3 oils (like in fish), and also good for your heart, skin, other stuff. He said it's very safe with no known side effects (and no reported cases of sjs), all natural. Of course anyone should check with their eye doctor first, and for dosage also. I have taken it for about 4 yrs now. It is important to get a good brand from health, vitamin section of store. It can take about 2-3 weeks of taking it 2-3 times a day before you will notice a difference so don't get discouraged right away.

I hope you can pass this info on, as it may help many SJS patients greatly, if you didn't already know about it.
Thanks, M'lissa
starmagik76@aol.com

Very helpful site for SJS Patients that suffer eye damage!

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