SJS Patient Events

Healthy Eyes, Happy People

Stevens Johnson syndrome (SJS) is a devastating, potentially fatal disorder of the skin and mucous membranes; SJS can strike anyone, at any time. It has numerous causes, but it is most commonly attributed to medications and infections. Surviving a bout of severe SJS can leave a person dealing with lifelong complications, including permanent skin damage, loss of finger and toe nails, loss of hair, and severe dryness of the eyes, mouth, genital area, urinary tract, gastrointestinal tract, and/or upper respiratory tract.

BostonSight PROSE treatment offers hope and restores quality of life to SJS survivors like Heidi, who attended SJS Care Week several years ago. After completing PROSE treatment she said, “When I remove my PROSE devices, I cannot open my eyes at all and am in agony. Without the devices I wouldn’t be able to leave my bed. I wouldn’t be able to function – that would be my life.  I am so grateful that BostonSight is only 45 minutes from my house; I feel blessed that I was able to find them.”

Paige (pictured) was just 10 years old when she was stricken with Toxic Epidermal Necrolysis, a more severe variant of SJS. During the acute phase of the disease, Paige lost more than 80% of her skin. She completed BostonSight PROSE treatment at Alkek Eye Center in Houston, TX, and her mom Renee had this to say: “PROSE treatment saved her. I can’t imagine her life without her PROSE devices. She used to sit in the corner, in the dark, with her eyes closed because she was in so much pain. I never want to see that again.”

SJS Care Week is an annual event, during which time BostonSight provides free lodging and travel assistance to help our patients with SJS come to Needham for PROSE treatment. “SJS can cause eye problems that persist years and even decades after leaving the hospital. Patients with chronic SJS can develop scarring of the ocular surface, requiring modification of PROSE devices to assure continued visual function as the medical situation evolves," stated BostonSight Medical Director Deborah S. Jacobs, MD.

Donate now to help young people and adults suffering with SJS. Make a tax deductible donation to the BostonSight Patient Networking and Outreach fund. Your gift – of any size – will go directly to support patients like Heidi and Paige and eliminate any barriers to treatment. Thank you.

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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...read more.