Maria de los Angeles, a Patient with SJS
Maria de los Angeles Suárez, a 14 year old Colombian girl, suffers from severe, unremitting eye pain since she was diagnosed with Stevens-Johnson syndrome (SJS) when she was 5 years old.
SJS is a rare but serious and potentially life-threatening condition affecting the skin in which cell death causes the epidermis to separate from the dermis. The syndrome is thought to be a hypersensitivity complex affecting the skin and the mucous membranes.
She wears special contact lenses which sit atop the sclera, creating a space over the cornea that is filled with artificial tears. The fluid-filled space becomes “a liquid corneal bandage,” that diminishes pain.
“I feel a lot drought in my eyes, pain, and I feel very depressed because there is not much for now that can improve my vision,” said Maria.
She uses Sustain eye drops constantly for her chronic eye dryness. “When I don’t use it I feel a lot of plain, it gets cloudy, the vision gets worse,” she said.
Often, Stevens-Johnson syndrome begins with flu-like symptoms, followed by a painful red or purplish rash that spreads and blisters, eventually causing the top layer of the skin to die and shed, according to Mayo Clinic.
Treatment focuses on eliminating the underlying cause, controlling symptoms and minimizing complications.
Maria, who lives in Maryland, receives eye treatment periodically at Boston Clinic with Dr. Perry Rosenthal and at the Bascom Palmer Eye Institute in Miami, and from other specialists. Her “guardian angel” is her mother Liliana Quintana, who takes care of her.