Stevens Johnson Syndrome Foundation
     Stevens Johnson Syndrome

September 17, 2004

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Our Prayers To:

SJS Foundation Board of Director Leroy Calvert, from Glenhead, Long Island, diagnosed with bladder and liver cancer. Our love and support are with him and his family at this difficult time.

Dr. Stephen Byrnes suffered a stroke on June 10, 2004, and passed away on Thursday, June 17th, 2004. Dr. Brynes authored the article "Fatal Reaction, the Horror of Stevens Johnson Syndrome." He was the first person to have an article published about the SJS Foundation. We will greatly miss him. Our thoughts and prayers go out to his family.

Dr. Stephen Byrnes

My SJS Experience, by Don Smith

October 13, 2003, I underwent a tonsillectomy and biopsies in other areas on the left side of my throat, due to a lump that was found by my primary care physician. It was diagnosed as cancer and surgery was performed to remove the infected lymph nodes and some muscle on the left side of my neck, on October 27. On December 8, I started radiation treatments on my throat.

On January 21, I went for my thirtieth of thirty-three radiation treatments, but the doctor told me that I needed to check into the hospital, instead. She took me to the Emergency Room, to be admitted and they took vital signs. Suddenly, I was put on oxygen and told that I had to be sent to another local hospital, because they weren't equipped to handle my needs.

On the fifteen minute ambulance ride, I tried to get the paramedic to have the driver turn on the lights and siren, to make the ride more exciting, but she wouldn't do it. At the same time, my girlfriend, Heather, and my primary care doctor were being called and told that I probably wouldn't live through the night.

I recall being taken into my room and IV's started. The next thing I was aware of was that, when I woke up, I was very weak and I was taken for a bath and dressing change. For the next couple of days, I wondered why everyone kept saying, "You look great," whenever they saw me. There was a mirror in the room and I saw some of the damage that had been done to my skin from my face to my legs, by Steven-Johnson Syndrome. I didn't look great, at all.. When one of the doctors mentioned how much better I looked than when he had seen me nine days before. I remind him that I'd only been there less than a week.. When I mentioned this to Heather, she told me that this was my second week in the hospital. Even now, I have no memory of the first week, whatsoever. The nurses said it was due to some of the medications I'd been given, during the first week.

I was in the hospital for fifteen days and was discharged only because Heather, who lives over three hundred miles away. had arranged to stay in Grand Rapids to take care of me, for the first two weeks. Arrangements had been made to have the food for my feeding tube, the pump and other supplies delivered the evening that I came home. The nurse instructed Heather in handling all of that because I wasn't alert enough to follow her instructions...or to do it, at that time. Heather took very good care of me during the time she was here and made sure I understood how to handle everything before she left. I didn't realize how much help she'd actually been, until I had to do everything for myself. It wasn't until that two weeks that Heather was with me, that I understood everything I'd gone through. She told me of the phone call from the doctor, and how she'd called the Burn Center before I even arrived. I was most impressed with their treatment of Heather because she had called every hour on the hour, during that first night and day and they, in her words, were, "Wonderful with me."

After the first couple of hours, they told her that there was no reason for her to rush over, so she could take care of obligations at home, before coming to Michigan. Whenever she called, if they hadn't seen me recently, they'd check on me, and let her know how I was doing. They even gave the 800 number, to the desk, so that she didn't have to pay long distance charges. When I went back for a follow up appointment, I was greeted warmly by all of the staff who saw me come in. Those who hadn't seen me arrive, dropped by the examination room to see how I was doing and to say, "Hello." It was the same extra caring and concern that I'd received as a patient, in their care.

Realizing that they had literally brought me from Death's Door, to recovering as well as I had been, I wanted to show my gratitude in a way that acknowledged them forever. On March 29, I dedicated one of my favorite paintings, "Incongruity," to the Burn Center staff who had treated me. [ Full story... ]

Don Smith

Miracles Do Happen, by, Katie Pennell

May 1995, I had been suffering from Interstitial Cystitis and reoccurring yeast infections. I went to my urologist to see about the IC. I happened to mention to him that I thought the yeast infections were making the IC worse. He told me that we would take care of the yeast first and then tackle the IC. He put me on a 28 day---100mg a day dose of Diflucan. Diflucan is a by-mouth yeast infection drug. (Come to find out later, I should have been given 1 - 150 mg. pill!) I took Diflucan, 15 pills, over 18 days. Below is the account of what happened next. [ Full story... ]

Katie Pennell

SJS Awareness Month

Once again the SJS Foundation participated in the Westminster Fair, located in Westminster, Colorado. Our Awareness booth was a huge success. The Government Proclamations were displayed as well as SJS photos and information on 3 display boards. We distributed over 500 SJS Fact sheets from 10 AM until 5:00PM. It was a long day but well worth the time. SJS survivors Amit Khatri, Penn Street and Julie McCawley volunteered their time to help pass out information. One woman knew a little girl in California that is a member of our support group. Many people stopped and asked questions and thanked us for being there. Special thanks to the volunteers that helped to man the booth. We couldn't have done it without you!
To see the slide show of Volunteers in Westminster Fair 2004 [ Click here ]

volunteers that helped in fair

Giving a kid a hug!

Thanks to Christopher Simpson and the Knights of York for their generous donation to the Give a Kid a Hug Fund. Thanks to their generosity we have been able to purchase SJS Teddy Bears to send to our littlest SJS victims. These 20 inch bears are made of soft material and are very huggable. Each bear wears an SJS T-shirt with the light house logo on the front and we also send a handmade fleece blanket for them to wrap themselves in for a hug from the SJS Foundation.

SJS Bear for kids

!! New !!
Fundraiser for the SJS Foundation

We need your help! The SJS Foundation has been offered a great fundraising deal through Home and Garden Party. We will be selling 10 oz. jar candles.

      If the customer buys:
      1 candle....the price is $8.00
      2 candles....the price is $7.00 each
      3 or more candles....the price is $6.00 each

These 10 oz. jar candles have a 50-hour burn time. They are fully wicked and scented from top to bottom and provide a nice, even surface burn, not to mention a wonderful fragrance! There are a total of 18 fragrances available, and they make wonderful gifts!

Please contact us by email at If you would like to participate. We will then send you Pamphlets and order forms and SJS Fact sheets. This is a great way to raise funds and awareness into SJS. We appreciate your help in this worthwhile cause.

Special Thank You from SJS Foundation.

!! New !! SJS NewsLetter ON LINE

As most of you are aware the SJS Foundation is a non profit organization. We depend on grants and donations to survive. Due to a lack of funding, we have been forced to make some changes. While SJS cases are on the rise, the stigma RARE is still associated with it. Newly diagnosed patients and their families are in dire need of SJS information packets. Unfortunately a decision had to be made to distribute the newsletter that was more cost effective. This will help us to continue to provide information packets to those in need.
Thank you for your understanding and continued support.

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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