Patient Stories

Stevens Johnson Syndrome (SJS / TENS) 


When Lindsay became engaged to be married in February 2015, she, like most brides, wanted to look and feel her best for her big day. “I remember expressing my concerns to Dr. (James) Chodosh. ‘Would I be able to keep my eyes open on my wedding day?’”   Read More

Feeling Normal Again

Jen had lost a significant percentage of her skin and suffered with extreme eye pain (SJS affects the mucous membrane tissue that lines many body cavities – including the eyes). “The pain was something that I can’t even describe. In retrospect, it doesn’t even seem real,” Jen remembered.   Read More

Paying it Forward

A BFS patient since 1997, Joe has chosen BFS as his primary charity, providing annual donations for years. Through his generosity he has provided assistance to patients who otherwise might not have the means to receive BostonSight® PROSE treatment.   Read More


A string of regrettable medical errors led to Paige developing Toxic Epidermal Necrolysis (TENS), a more severe variant of SJS, in which the body essentially burns from the inside out...   Read More

A Life Changer

But then life threw her a curve ball. Tiffany took a common medication and developed toxic epidermal necrolysis (TENS), the most severe form of Stevens Johnson syndrome (SJS). Her first symptom appeared on a Monday; she awoke with a large, painful blister on the roof of her mouth....   Read More

Eyes Wide Open

It seems unimaginable that infected tonsils could lead to so much suffering. But as anyone who develops Stevens Johnson syndrome (SJS) knows, medication toxicity can trigger a serious, overwhelming allergic reaction...   Read More

Feeling Blessed

A month later when she woke up from the coma, she was blind and had burn scars all over her body. She had developed keratinization in her eyes, a condition in which cells in the eye convert to hair and nail cells, which scratch the delicate cornea with each blink. But thankfully she was alive.   Read More

Determined to Find Help

“I had almost reached the point of surrendering when I started going to the Internet. I searched until I came up with BFS and saw that they had helped other people with SJS.”...   Read More

Turning Things Around

She toughed it out for a couple of days, but Monday night she called me (I was at a conference in Atlanta – my first trip away from her and Zoe in two years) and said I might need to come back if she didn’t feel better in the morning...   Read More

Getting Through it With Your Life

Six years after surviving SJS, Eileen Share found BFS and got her sight back. Able to read for the first time in years, she joined a local book group. Soon after she caught the volunteering bug and got involved with a youth literacy organization...   Read More

Getting Through it With Your Life

A Hero Among Us

When Stevens Johnson syndrome hit 22 year-old Jeriann Peabody last October, it hit her hard. By the time she left the hospital, her eyes were severely light sensitive and she was in constant pain, making returning to work and college impossible...   Read More

Facing Uncertainty

In December 2007, Ian Gonzalez was admitted to Children’s Hospital in Mexico City with SJS. Ian’s best hope for survival lay in his transfer to the Burn Center in Texas. Almost Christmas, the wrenching decision was made….   Read More