A Stevens Johnson Syndrome/Toxic Epidermal Necrolysis (SJS/TEN) survivor has written a book detailing her experience as a victim of this extremely painful, and often fatal, skin condition.

Michelle Frazzetto, a resident of Cape Coral, Fla., has recently published a book titled “Still Wearing My Heels,” which takes the reader through her initial development, diagnoses, and treatment of SJS and TEN. This memoir of her treatment and recovery from SJS and TEN was published this year, almost 30 years after Frazzetto developed the skin conditions.

Before her SJS and TEN experience, Frazzetto was a successful 21-year-old living and working in Manhattan at a brokerage firm. However, Frazzetto suffered a seizure following a bicycle accident, which required her to be hospitalized for further treatment. She was then allegedly misdiagnosed with epilepsy and prescribed phenobarbital, an anti-seizure drug which allegedly set off the SJS allergic skin reaction.

Frazzetto allegedly experienced body blisters resembling those of burn victims. As the SJS progressed and turned into TEN, the blisters and burns spread, resulting in the top layer of her skin sloughing off along with her skin and nails, and eventually scarring her eyes. She was then put into a medically induced coma for months at a time as her organs began to fail.

When Frazzetto was eventually released from the hospital after her SJS/TEN treatment, she had lost 64 pounds and required years of physical therapy in order to walk again unaided. Even 28 years after the SJS/TEN incident, Frazzetto allegedly still experiences illnesses related to the SJS damaged organs, as well as chronic pain and is blind thanks to the TEN skin reaction.

According to Frazzetto, it took her nearly three decades to write this book about her experience as an SJS and TEN victim because it was extremely difficult to think through and relive the experience.

“Although it hurt me and my mother to write it, the purpose of this book is to make people aware. I see it happening much too much now. Children are suffering. Little kids are suffering this from taking Motrin, Tylenol. They should make people more aware. It’s not just the silly warnings you hear on TV, like your tongue may swell and you may get a sore throat. It’s already too late when that happens! Why don’t they say it can be fatal! They are killing people!” Frazzetto wrote.

Frazzetto is not the only person who has suffered from SJS, which later progressed to TEN. Many individuals and families of individuals have filed SJS lawsuits or joined SJS class action lawsuits seeking legal action against the manufacturers of the drugs allegedly responsible for the potentially deadly skin reaction.

SJS and TEN

SJS is a skin condition in which the top layer of skin becomes blistered or burned and eventually falls off. When the burns cover more than 30 percent of a patient’s body, the skin reaction becomes TEN. Anyone can develop SJS and/or TEN as an allergic skin reaction from a variety of over-the-counter and prescription medications.

While a person could potentially contract an SJS or TEN allergic reaction from any medication, certain drugs have a higher prevalence of SJS victims than others. These drugs include:

• Antibiotics
• Anticonvulsants
• Sulfa based drugs
• Bactrim
• Septra
• Acetamenophin
• Amoxicillan
• Azithromycin (Zithromax)
• Barbiturates
• Ibuprofen-Motrin
• Penicillin
• Naproxen