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.

This past August we received a phone call from a producer of the Montel Williams Show. She was researching on the internet and came across the Stevens Johnson Syndrome Foundation. She asked me to tell her about Stevens Johnson Syndrome and after a few minutes invited Julie and I to travel to New York to appear on the Montel Show. At first I thought it was a joke. I couldn’t believe that it was really happening. Several weeks past and we didn’t hear anymore. I assumed it wasn’t going to happen at all. Then the call came asking what airport we would be traveling from. I don’t know why or how they found us. I believe that our prayers for awareness were about to be answered.

On October 18th Julie and I flew to New York. We arrived very late that night and were met by a very nice young lady from Montel’s show. She checked us in to our hotel and told us we would go to the studio for taping at 1:00pm the next day. It was very exciting and Julie was thrilled to get a chance to meet so many nice people.

Montel was wonderful with Julie. He was very compassionate. Before she was brought on the stage he asked me if the lights would be too bright for her. I had to be honest, yes they would be. They were spotlights and Julie can’t even tolerate our living room lights. Montel did something so amazing for a TV host to do. He asked his producers to turn the lights down and even had them turn the spotlights off. He did it just so that Julie would be comfortable.

Montel explained to the audience that SJS can happen to anyone. He also told them how there wasn’t enough research into Stevens Johnson Syndrome. He then told Julie you just educated a country. He gave us the opportunity to get national coverage and awareness into SJS. After the show aired we received numerous phone calls and emails from across the country, including one from a family who’s child was reacting to an over the counter medication. I believe with all my heart that Montel helped to save lives by airing this story about SJS.

On November 20th a film crew came out and filmed a follow up story. Montel doesn’t forget about something if he thinks it is a worthwhile cause. Hopefully more people will be able to find out about Stevens Johnson Syndrome before it finds someone they love.

Thank you Montel and your wonderful staff for helping promote SJS awareness!