Emily McAllister, a mother from Chicago, has endured a life-altering experience after suffering a severe reaction to the medication lamotrigine, commonly used to treat epilepsy and bipolar disorder. McAllister developed Stevens-Johnson Syndrome (SJS), a rare but potentially fatal condition, resulting in the loss of nearly 90 percent of her skin, including her facial tissue.
This debilitating side effect, which affects approximately 1 to 2 individuals per million annually in the United States, led to significant health challenges for McAllister. Doctors assert that the syndrome was triggered by her use of lamotrigine, which is prescribed to around 2 million Americans each year.
Symptoms and Hospitalization
McAllister began experiencing unusual symptoms shortly after starting the medication in September 2022. About 16 days into her treatment, she noticed red, dry eyes and swelling in her lips and face. These early indicators quickly escalated to a painful, blistering rash that spread across her body.
“I thought I wasn’t sure what it was; I just knew something didn’t feel right,” McAllister recalled. As her condition worsened, she sought medical attention. Upon arrival at the hospital, she was diagnosed with SJS and spent seven weeks in the burn unit, where she underwent intensive treatments.
Despite her efforts, McAllister has permanently lost vision in both eyes due to complications related to SJS. Although she underwent several surgical procedures, including eyelid reconstruction and a stem cell transplant, her sight deteriorated rapidly after her hospital discharge.
Understanding Stevens-Johnson Syndrome
SJS is characterized by a severe inflammatory reaction that can cause widespread skin detachment and damage to mucous membranes. The condition often begins with flu-like symptoms and can escalate rapidly, leading to critical complications such as organ failure.
The underlying mechanism involves the immune system mistakenly identifying certain medications or their byproducts as foreign threats. This misidentification prompts the body to attack its own skin and mucous membranes, resulting in extensive damage.
While lamotrigine is primarily prescribed for epilepsy and bipolar disorder, it is also commonly used off-label for various conditions, including migraines and chronic pain. The FDA has issued a Black Box Warning for lamotrigine, the strongest alert available, emphasizing the need for careful monitoring of patients when they first start the medication.
Before her experience, McAllister noted that her healthcare provider had mentioned the risk of a rash but downplayed the severity and rarity of such reactions. “There’s not enough awareness about SJS,” she stated, reflecting on her journey and the trust she placed in her healthcare team.
Despite the challenges she faces as a result of SJS, McAllister remains hopeful. She is scheduled for further surgeries on her left eye and continues to advocate for increased awareness of the condition. “I feel lucky to be alive because SJS can be fatal. I’m a completely different person now,” she said, acknowledging the profound impact the syndrome has had on her life.
As McAllister navigates this new reality, she emphasizes the importance of raising awareness about SJS and the risks associated with medications like lamotrigine. Her journey highlights the critical need for better education and communication between healthcare providers and patients regarding potential side effects of commonly prescribed drugs.
