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“For me, just being here alive is a story to tell,” Karyl Bell told WNYT-TV. In October 2009, the then-17-year-old unexpectedly developed a rash on her face. Her tongue swelled and she had trouble swallowing and breathing. Her condition quickly worsened. Red, painful blisters broke out on her body. Lesions in her eyes caused her eyes to swell shut. All doctors could tell her worried mother was to sit by as the reaction ran its course and, “hope for the best.”

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The Epilepsy Foundation is warning people who take Dilantin or Lamictal to control their seizures that the medications can cause users to suffer from a rare but serious skin condition known as Stevens Johnson Syndrome (SJS).

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The Centers for Disease Control (CDC) has issued a warning about the childhood MMRV vaccine for measles-mumps-rubella-chickenpox, saying it may cause the painful and life-threatening allergic reaction known as Stevens Johnson Syndrome (SJS) as well as other serious reactions.

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The passing of former NBA star Manute Bol from an allergic reaction to medication has promoted many people to ask, What is Stevens Johnson Syndrome (SJS) and who is at risk? The answers, unfortunately, are not always clear. SJS is a serious skin and mucous membrane condition that has been associated with thousands of medications, both over-the-counter and prescriptions. The most common ones linked to SJS include some of the most widely used medications – ibuprofen and antibiotics. Others on the list are anti-viral and anti-seizure drugs.

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Tippecanoe County, Ind., inmate Charity-Lekiea Brown says she felt ill almost immediately after being given medication to treat her seizure disorder. “I was having hot flashes, I was getting up every 10-15 minutes to go (to the bathroom). I was getting very dehydrated and my migraines were coming back,” she told Fox 59 News. And then she developed a rash all over her body. The rash turned to blisters that spread over her skin, into her mouth and genitals, and made her eyes swell shut. She was rushed to the hospital, where she was diagnosed with Stevens Johnson Syndrome (SJS), a severe allergic reaction to medication that affects the skin and mucous membranes.

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Jordan Lewis was just six years old when the medication he took for an ear infection nearly cost him his life. Jordan, now a recent high school graduate, had developed an allergic reaction to the medication, called Stevens Johnson Syndrome, or SJS. The little boy broke out in a rash that turned to blisters. The painful sores covered his skin, mouth and eyes. “I remember my mom crying a lot, actually,” Jordan told CBS 2. “There was a lot of that going on.”

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It’s been almost a year since we last checked in on Rachel Corley-Gutierrez, better known by her YouTube moniker, SpunkyRachel. The young woman was diagnosed with the rare but life threatening allergic reaction to medication known as Stevens Johnson Syndrome (SJS) just two weeks after taking ibuprofen for a headache. Her YouTube video diaries track her long and painful road to recovery. Her latest update is encouraging.

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Tibotec Therapeutics, makers of prescription medication Intelence (etravirine) used to control HIV infection in adults, recently notified health care professionals that the medication has been linked to a rare but life-threatening skin condition known as Stevens Johnson Syndrome, SJS.

Early this year, Intelence was approved by the the Food and Drug Administration (FDA) for use in the treatment of HIV. At that time, data indicated a slight risk of SJS.

SJS, and its most severe form, toxic epidermal necrolysis, TEN, are identified by a rash on the skin that blisters over causing the skin to peel off in sheets. The condition is extremely painful and often requires hospitalization to treat the open wounds on the skin, mouth, eyes and other mucous membranes. Complications include infection, dehydration, vision problems, organ dysfunction and death.

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SpunkyRachel is back and she’s looking great. You may remember SpunkyRachel from previous posts. We’ve been following her recovery from Stevens Johnson Syndrome (SJS) on YouTube. Her videos offer a personal insight into her emotional struggle as she copes with the physical recovery from the rare but life-threatening skin condition.

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When he was not quite 2 years old, James Lumasag was diagnosed with a rare but life threatening skin condition after receiving a round of antibiotics to treat a cough and fever. The toddler fought for his life in the intensive care unit of a hospital, where he received 22 bags of plasma as his skin peeled away from his body. “His whole body, except his head, looked totally burnt,” his mother Merlyn said. “James suffered too much.”

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