Emily McAllister experienced a 1-in-2,500 debilitating reaction that led to the loss of nearly 90 percent of her skin, including the skin on her face.
Doctors say McAllister suffered a rare side effect from her use of lamotrigine, a common drug used to treat epilepsy and bipolar disorder, which triggered a case of Stevens-Johnson Syndrome (SJS).
McAllister, a mother-of-one in Chicago, has also permanently lost sight in both her eyes, even after several reparative surgeries.
SJS causes widespread, painful, blistering skin rash and is potentially fatal.
McAllister began noticing odd symptoms about 16 days after starting the medication, including red, dry eyes and swelling in her lips and face. Those signs quickly turned into a growing red, painful rash.
She said: ‘I thought I wasn’t sure what it was, I just knew something didn’t feel right. The second day, my sister came to my house, and I was pretty 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.’
When her symptoms persisted, she went to the hospital, where she was diagnosed with SJS and was admitted to the burn unit for seven weeks.
Over the past three years, Emily has endured the loss of 87 percent of her skin, followed by a grueling series of procedures: eyelid reconstruction, a stem cell transplant, a salivary gland transplant and three uterine surgeries because of the severe scarring that SJS caused in the lower reproductive tract.
Chicago mother Emily McAllister has permanently lost vision in both eyes, despite multiple reparative surgeries. Her blindness resulted from Stevens-Johnson Syndrome (SJS), a reaction triggered by lamotrigine, a medication for epilepsy and bipolar disorder
SJS is extremely rare, affecting an estimated 1 to 2 people per million annually in the United States. It is most frequently triggered by medications like antibiotics and anticonvulsants.
The immune system can mistakenly identify these drugs or their metabolic byproducts as foreign threats, launching a fierce assault on the body’s own skin and mucous membranes, the body’s first lines of defense.
This attack triggers a catastrophic inflammatory cascade that causes widespread cell death, leading to severe blistering, skin detachment and organ damage.
Around 2 million Americans take lamotrigine, with nearly 11 million prescriptions filled in 2023. While primarily for epilepsy and bipolar disorder, lamotrigine is often prescribed off-label for migraines, schizophrenia, obsessive-compulsive disorder and chronic pain resulting from damage to the nervous system.
McAllister was prescribed lamotrigine in September 2022.
On day 17 of taking the medication, when her breathing began to deteriorate, she became incoherent and the rash, which had spread from her face to her torso, began blistering. Suddenly, she realized she needed medical attention.
A few days into her hospital stay, McAllister temporarily lost her vision. Although it returned upon discharge, it remained significantly blurred.
Over the following months, her sight deteriorated gradually, culminating in a complete loss of vision within a two-month period.
The odds of experiencing a widespread skin rash linked to the medicine is rare but potentially fatal inflammatory reaction that involves flu-like symptoms, a spreading red and purple rash and blistering skin that peels off
The whole-body inflammation caused by SJS can damage the cornea and the surface of the eye, leading to scarring and blistering.
SJS frequently presents with intense conjunctivitis, or pink eye, characterized by significant inflammation of the eye’s mucous membranes.
Over time, persistent inflammation can lead to ocular surface disease, disrupting the eye’s protective tear layer and impairing its structure and function, thereby worsening dry eye.
Overall, McAllister has undergone six eye surgeries since she broke out in that potentially deadly rash in 2022.
Now legally blind in both eyes, she said her ‘whole life is different’ since recovering from SJS. Three specialists have told her that her vision will never return on its own.
But McAllister has not given up hope of regaining her sight. She is due to have more surgeries on her left eye in the future.
She said: ‘Now I’m blind in both eyes. In the left eye, I don’t have any vision and in the right eye, I wear a special contact lens that helps a little bit, but I’m still considered legally blind.’
SJS and Toxic Epidermal Necrolysis (TEN) are prominently noted on the lamotrigine label. Because these reactions are life-threatening, the FDA mandates a Black Box Warning, the agency’s strongest alert, emphasizing the need for careful dosing and vigilant patient monitoring, particularly when the patient first begins taking the medication.
The immune system can mistakenly identify certain drugs and their byproducts as foreign threats, triggering a severe attack on the body’s own skin and mucous membranes, its primary defensive barriers
Before the entire ordeal, McAllister claims a doctor warned her about the possibility of a severe rash but did not go into detail about it, stressing its rarity. When the disease struck McAllister, she was blindsided.
She said: ‘There’s not enough awareness about SJS, you trust your doctor, then something like this happens.
‘Before this, I never would’ve worried about any medication prescribed by a doctor.’
Stevens-Johnson syndrome can occasionally develop into TEN. SJS is when the inflammation affects less than one-tenth of the body surface area, but when the lesions cover about one-third or more of the body surface area, it is considered toxic epidermal necrolysis, in which the entire top layer of skin undergoes full-thickness death.
The condition can get progressively worse until it causes potentially deadly sepsis, respiratory failure and multiple organ failure.
McAllister said: ‘I do feel lucky to be alive because SJS can be fatal. I’m a completely different person now. It makes daily life a lot more difficult. I feel like I’ve lost a lot of my independence.
‘I face a lot of medical issues and setbacks and my life is unfortunately never going to be what it was prior to SJS, but at the end of the day I am lucky to continue to live life and be there while my daughter grows up.’
