Grace Avila was having back pain when her physician prescribed a muscle relaxer. Within a few weeks, blisters appeared across her body. Doctors thought she had a hand, foot, and mouth disease, a common viral infection in young children that sometimes occurs in adults. Over and over, she was told, “Just let it run its course.” But to Grace, whatever was happening to her body felt like it was eating her alive. She couldn’t eat, walk, or see.
When her sister visited, she immediately called 911. Grace had blisters covering her mouth, eyes, throat, torso, and more. “I’d rather be dead than be here,” she told her sister.
Living with Stevens-Johnson Syndrome
A nurse by profession, her sister was convinced Grace had Stevens-Johnson Syndrome (SJS), a severe condition that affects the skin, genitals, eyes, and mucous membranes, including the lining of the digestive tract. Stevens-Johnson Syndrome is caused by an adverse reaction to medication or, sometimes, infection and can cause severe symptoms such as Grace’s that require months to heal, if they heal at all.
Grace’s condition was so debilitating that she spent two weeks in the hospital with her eyes completely covered by bandages and her mouth sealed shut because of blisters. She was kept alive via IV fluids.
After two weeks in care, she had surgery, where surgeons placed membranes on her eyes to prevent further scarring. Following her hospital stay and surgery, Grace’s left eye didn’t produce any tears, and it never will again. When she cries, the eye becomes terribly swollen.
Grace was devastated. An avid athlete, she did CrossFit every day and ran marathons. Now, she could barely walk, and she was unable to see.
“I needed one hundred percent help after I got out of the hospital,” Grace says. “I needed help caring for my children, my sister had to bathe me, I couldn’t work, and then six months later, my mother passed away. It was the worst year of my life. I didn’t want to open my eyes because the pain was so excruciating. I had ointment and drops and drops and drops, but they never really helped.”
Finding Help for Her Eyes
Thus, Grace turned her attention to her vision and healing to find the best doctors. She didn’t understand why she couldn’t just get a new cornea. She saw a corneal specialist at Memorial Herman Health in Houston, who referred her to Dr. Stephen Pflugfelder, an ophthalmologist at Baylor College of Medicine. He recommended PROSE.
PROSE is a comprehensive medical treatment that includes cornea specialist ophthalmologists and optometrists who have completed an intensive BostonSight PROSE Clinical Fellowship. During treatment, doctors customize PROSE devices, highly specialized scleral lenses, out of gas-permeable polymers for each patient’s condition and unique eye shape. The devices are filled with preservative-free saline and placed on the sclera, the white part of the eye. The saline is in direct contact with the cornea and provides a constant flow of moisture to the eye.
“The ocular surface is a target of SJS, which causes scarring of the eyelids, conjunctiva, and ducts of the tear glands,” says Dr. Pflugfelder. “This often leaves patients with a severely dry ocular surface that is susceptible to trauma from the scarred eyelids and turned-in eyelashes during blinking. Patients may experience severe eye discomfort and light sensitivity, and, over time, these problems can cause sight-threatening cornea clouding.”
PROSE for SJS Patients
“PROSE is the optimal therapy for this condition because it keeps the cornea moist and shields it from irregular eyelids and lashes. Patients experience almost immediate relief from their eye discomfort and light sensitivity when the devices are placed on the eye. It can preserve their vision and allow them to return to a normal functional life,” he says.
Together, Dr. Plugfelder and Dr. Christina Abuata, a PROSE Provider, worked with Grace to design a custom prosthetic device for her left eye. She has been wearing a 19mm device on her left eye for the past nine years and recently received a PROSE device for her right eye, too.
“Most SJS patients will need to use artificial tears, ointments, and prescribed medications to feel relief throughout the day,” said Dr. Abuata. “However, this sometimes isn’t enough, and more aggressive treatment is required. PROSE is an alternative treatment that is indicated for patients with SJS that can help them feel better, see better, and go back to their normal lives.”
“Without PROSE, I cannot live,” Grace says. “I cannot open my left eye. It burns. It doesn’t produce tears. It’s like day and night when I put my PROSE devices in. I get up at four in the morning to put them in so I can work out.”
Using PROSE Devices
Grace says the PROSE devices can be a bit uncomfortable because of her eye condition, but that pain and discomfort are different feelings. “I’d rather be a little uncomfortable to start and not be in pain. It’s an absolute relief when the devices are on.”
It took more than a year for Grace to heal and manage the emotional toll of the disease and her mother’s death.
“It took me a long time to accept what was wrong with me,” she says. ‘’I was a size zero because I couldn’t eat, but slowly, as I healed, I started eating better. I went on retreats, had counseling, and prayed a lot. I had to learn how to cope with losing my mother and my health. I lost me, and I had to find me again.”
She gives thanks to God for the support of her family and her workplace, knowing that not everyone is so fortunate.
“Your health is completely shattered with SJS,” she says. “I didn’t want to live. PROSE changed my whole life. I one hundred percent can open my [left] eye. I have twenty twenty vision. I can see. I would sell a kidney for this if I didn’t have such good insurance. I want to share my story because it’s unbelievable how much pain you’re in, and then, Bam! No more pain. We need PROSE.”