Woman loses 87% of her skin, goes blind due to rare skin disorder
A woman in Illinois, U.S., developed a debilitating skin disease, which eventually led to the loss of 87% of her skin and her sight.
According to a report by PEOPLE Magazine, Emily McAllister, a mother of one, started taking a new anti-seizure medication for epilepsy in September 2022. It was prescribed by her doctor. After 16 days, unusual symptoms began manifesting.
Talking to Kennedy News & Media, she described how her face and lips started swelling, and her eyes became red and dry. A painful rash also appeared on her torso, and she had difficulty breathing.
On the second day of the symptoms, McAllister's sister came to visit and found her incoherent.
"I was having a hard time breathing and was disoriented. That's when the rash started to spread across my face and left me with blisters. It was very painful," McAllister said.
At the hospital, doctors told her she was suffering from Stevens-Johnson Syndrome, a rare skin disease brought about by an allergic reaction to certain medications, such as antibiotics and anti-seizure drugs. Some infections can also cause the disease.
McAllister was admitted to the hospital's burn unit and spent the next three years in the hospital. Because of the blistering rash, she lost 87% of her skin. As part of McAllister's treatment, she had to go through multiple surgeries, including eyelid reconstruction, three uterine surgeries, a stem cell transplant, and a salivary gland transplant.
In addition to all that, a complication of the disease caused McAllister's eyesight to deteriorate. Despite undergoing six eye surgeries, she is now legally blind in both eyes. Doctors say her vision cannot be restored on its own; most of the damage is permanent. Her left eye is completely blind. She uses a special contact lens for her right eye, but is still considered legally blind.
McAllister said SJS is "so severe it lasts your whole life. My life is a lot different; I'm considered disabled now."
Still, she is thankful.
"I do feel lucky to be alive because SJS can be fatal. I am lucky to continue to live life and be there while my daughter grows up," she said.
How severe can Stevens-Johnson disease get?
The skin disease can come with fever, sore mouth and throat, burning eyes, fatigue, and rashes and blisters on the skin. Like what happened to McAllister, the rashes can spread to the eyes, mouth, and nose, and down to the throat, chest, urinary tract, and genitals. According to the Cleveland Clinic, as the blisters spread, looking like open wounds, the top layer of the skin that's affected dies, then sheds.
In its most severe form where at least 30% of the skin is affected, SJS can develop into toxic epidermal necrolysis. According to the National Institutes of Health, TEN is fatal in about 30% of people suffering from it.
Additionally, based on the agency's studies, people in the Philippines, Malaysia, and Taiwan are 10 times more likely to be afflicted with SJS than in Caucasian countries. However, a seven-year study conducted in the Philippine General Hospital found that both SJS and TEN accounted for 0.03% of total admissions; mortality rate for SJS was at 4.7% and 16.7% for TEN.
