Emily McAllister, a mother from Chicago, endured a devastating medical ordeal after suffering a severe reaction to lamotrigine, a medication widely prescribed for epilepsy and bipolar disorder. This reaction resulted in her diagnosis of Stevens-Johnson Syndrome (SJS), a rare but potentially fatal condition that led to the loss of nearly 90 percent of her skin, including significant areas of her face.
SJS is characterized by a painful, blistering rash and can lead to serious complications, such as vision loss. McAllister, who began taking lamotrigine in September 2022, started experiencing troubling symptoms just 16 days after beginning the treatment. Initially, she noticed red, dry eyes and swelling in her lips and face. These symptoms rapidly escalated into a painful, spreading rash.
“I thought I wasn’t sure what it was; I just knew something didn’t feel right,” McAllister recalled. “The second day, my sister came to my house, and I was pretty incoherent. I was having a hard time breathing and was disoriented.”
As her condition worsened, McAllister sought medical attention. Following her admission to the hospital, she was diagnosed with SJS and placed in the burn unit for seven weeks. Over the past three years, she has undergone numerous surgeries including eyelid reconstruction, a stem cell transplant, and procedures to address severe scarring in her lower reproductive tract caused by the syndrome.
SJS: A Rare but Severe Reaction
SJS is exceedingly rare, affecting approximately 1 to 2 individuals per million annually in the United States. The condition often arises in response to medications, particularly antibiotics and anticonvulsants like lamotrigine. The immune system can mistakenly perceive these drugs as threats, launching an aggressive attack on the body’s skin and mucous membranes. This results in a catastrophic inflammatory response that can lead to extensive cell death and severe blistering.
In fact, nearly 2 million Americans are prescribed lamotrigine, with around 11 million prescriptions filled in 2023. While its primary use is for epilepsy and bipolar disorder, doctors frequently prescribe it off-label for conditions such as migraines and chronic pain.
McAllister’s experience underscores the importance of awareness regarding the potential side effects of medications. Despite being warned by her doctor about the possibility of a severe rash, she felt unprepared for the reality of SJS. “There’s not enough awareness about SJS. You trust your doctor, then something like this happens,” she stated.
Impact on Vision and Quality of Life
As her treatment progressed, McAllister experienced a significant decline in her vision, ultimately leading to permanent blindness in both eyes. Despite undergoing multiple reparative surgeries, she remains legally blind. “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,” she explained.
The FDA has issued a Black Box Warning regarding lamotrigine, highlighting the risk of SJS and Toxic Epidermal Necrolysis (TEN), a more severe form of the syndrome. This warning emphasizes the necessity for careful monitoring of patients, particularly during the initial stages of treatment.
McAllister expressed her gratitude for surviving but acknowledged the profound impact SJS has had on her life. “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,” she remarked. She continues to face numerous medical challenges and is scheduled for more surgeries aimed at restoring some function to her left eye.
Her story serves as a stark reminder of the potential dangers associated with common medications and the critical importance of patient education and awareness. While McAllister’s journey has been fraught with challenges, she remains hopeful for the future, particularly as she witnesses her daughter grow up.
