What you need to know

• Emily McAllister was diagnosed with Stevens-Johnson syndrome (SJS), a skin disorder that causes painful blisters.

• She was admitted to a burn unit, lost 87% of her skin, and was legally blind in both eyes due to the skin disease.

• SJS can be fatal. McAllister said he was “lucky to be alive.”

An Illinois woman was lucky to survive after suffering a debilitating skin disease that caused her to lose 87% of her skin.

In September 2022, Emily McAllister, a mother of one from Chicago, started taking a new anti-seizure drug prescribed by her doctor for epilepsy. But 16 days later, the now 30-year-old noticed she was experiencing unusual symptoms.

The former substance abuse counselor’s eyes became red and dry, and her face and lips began to swell, she told Kennedy News & Media. solar. Her symptoms eventually progressed to a painful rash on her torso and difficulty breathing.

“I didn’t know what it was, but I just knew something wasn’t right,” she explained. “On the second day, my sister came over and I was pretty incoherent. I was having trouble breathing and was disoriented. That’s when the rash started to spread all over my face and I had blisters. It was very painful.”

As Ms. McAllister’s condition worsened, she realized she needed treatment and went to the hospital. She soon learned from her doctor that she had a skin disease called Stevens-Johnson syndrome (SJS).

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SJS is a rare and serious skin disease caused by an allergic reaction to drugs, such as antibiotics and anti-seizure drugs, and sometimes to infections.

Symptoms include fever, sore mouth or throat, fatigue, burning eyes, red or purple rash, and skin blisters. As these sores (painful open sores that look like burns) progress, the top layer of the affected skin dies and begins to slough off, according to . cleveland clinic. Sores usually spread to the eyes, chest, mouth, nose, throat, urinary tract, and genitals.

SJS can also progress to toxic epidermal necrolysis (TEN), the most severe form, in which at least 30% of the skin is affected. According to National Institutes of Healthapproximately 30% of people who develop TEN do not survive.

Mr McAllister was admitted to the hospital’s burn unit and spent the next three years fighting for his life. She lost 87% of her skin to a blistering rash and underwent numerous surgeries, including eyelid reconstruction, a stem cell transplant, a salivary gland transplant, and three uterine surgeries.

During that time, McAllister’s vision also deteriorated as a complication of SJS, resulting in her undergoing six eye surgeries.

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McAllister is now legally blind in both eyes, and multiple experts have told her her eyesight will not recover on its own. Even after recovering from SJS, much of the damage is permanent, she says.

“Right now, I am blind in both eyes. I have no vision in my left eye and I wear a special contact lens in my right eye, which gives me a little bit of vision, but I am still legally considered blind.”

She says SJS is “very serious and lifelong. My life is very different and I am now considered disabled.”

However, McAllister admitted that she is trying to stay positive about her health journey.

“I feel lucky to be alive because SJS can be fatal,” she said. “I’m lucky to be able to continue living my life and be there for my daughter as she grows up.”

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