STEVENS-JOHNSON SYNDROME (SJS) The facts about RISKS S JS and TENS are life-threatening reactions. If left untreated, they can result in death. Complications can include permanent blind- ness, dry-eye syndrome, photophobia, lung damage, chronic obstruc- tive pulmonary disease (COPD), asthma, permanent loss of nail beds, scarring  of  the  esopha- gus  and  other  mucous membranes,     arthritis, and chronic fatigue syn- drome.   Many   patient’s pores  scar  shut,  causing them   to   retain   heat. These  are  just  some  of the side-effects that have been reported. TREATMENT F irst and foremost, affected persons must stop taking the offend- ing drug immediately to prevent complications. Treatment for SJS is good supportive care. Because patients literal- ly burn from the inside out, burn, infectious disease, ophthalmology and dermatology teams are recommended. IV fluids and high calorie formulas  are  given  to  promote  healing.  Antibiotics  are  given  when necessary to prevent secondary infections such as sepsis. Pain med- ications such as morphine are administered to make the patient as comfortable as possible. Most  SJS  patients  can  be  managed  in  medical  ICU  or  pediatric ICU. Patients with TENS should be treated in a burn unit. DRUG REACTIONS: A SERIOUS ISSUE D rug reactions are one of the leading causes of death in the United States. Yet, less than one percent are reported to the FDA, because there is no mandatory reporting system in effect for post- marketing adverse drug reactions. Similarly, no one has an accurate count of the cases of SJS and TENS. Although SJS is listed as a rare disease, it may be more prevalent than pre- viously thought. WHO WE ARE T he SJS Foundation was founded to be a resource to SJS victims and their families. Our  mission  is  to  provide  support  services, and  compile  and  distribute  valuable  infor- mation about SJS to the public and medical professionals regarding treatments and thera- pies that may prove beneficial to SJS sufferers. We  work  to  promote  awareness  about  the signs of SJS so that a quick diagnosis can be made  and  the  offending  agent  stopped  as soon as possible. ©2001 SJS Foundation Duplication of the information and photographs contained herein is strictly prohibited. All rights reserved. SJS: WHAT IS IT? S tevens   Johnson   Syndrome   (SJS),   and TENS    (Toxic    Epidermal    Necrolysis Syndrome)—another form of SJS—are severe adverse reactions to medication. Adverse drug reactions (ADR’s) account for approximately 150,000  deaths  per  year  in  the  U.S.  alone, making  drug  reactions  the  fourth  leading cause of death in the United States. SJS is one of the most debilitating ADR’s recognized.  It  was  first  discovered  in  1922  by  pediatricians  A.M. Stevens and S.C. Johnson after diagnosing a child with severe ocular and oral involvement to a drug reaction. WHAT CAN CAUSE SJS? A lmost any medication including over-the-counter drugs, such as  Ibuprofen,  can  cause  SJS.  Most  commonly  implicated drugs are anti-convulsants, antibiotics (such as sulfa, penicillin and cephalosporin) and anti-inflammatory medications. WHO CAN GET SJS OR TENS? A lthough SJS afflicts people of all ages, a large amount of its victims are chil- dren. More female cases have been report- ed  than  male,  however  it  does  not  dis- criminate    against    anyone.    The    SJS Foundation hears from people around the world who suffer from SJS and TENS. SJS: KNOW THE SIGNS! R ecognition  of  the  early  symptoms  of  SJS  and  prompt  medical attention are the most invaluable tools in minimizing the possi- ble long-term effects SJS may have on its victims. SYMPTOMS •  Rash, blisters, or red splotches on skin •  Persistent fever •  Blisters in mouth, eyes, ears, nose, genital area •  Swelling of eyelids, red eyes •  Conjunctivitis •  Flu-like symptoms •  Recent history of having taken a prescription or over-the-counter medication Target lesions are not always seen in SJS! IF YOU NOTICE TWO OR MORE OF THESE SYMPTOMS, CONTACT A PHYSICIAN IMMEDIATELY! The Stevens Johnson Syndrome Foundation is a non-profit organization. Your donations are tax deductible and will provide invaluable aid to a worthwhile cause. To make a contribution to the SJS Foundation, please contact us at: Stevens Johnson Syndrome Foundation 9285 N. Utica St., Westminster, CO   80031 E-mail: sjsupport@aol.com / phone: 303-635-1241 www.sjsupport.org STEVENS JOHNSON SYNDROME F  O  U  N  D  A T  I  O  N