A woman in her 30s from Chicago lost approximately 87% of her skin and suffered permanent blindness after developing a rare and severe reaction to the anti-epileptic drug lamotrigine, prescribed by a physician in September 2022.
Rare Drug Reaction Causes Devastating Loss of Skin and Sight
Table of Contents
A seemingly routine medication led to Stevens-Johnson syndrome, a life-altering condition with potentially fatal consequences.
- Stevens-Johnson syndrome (SJS) is a rare, severe immune response triggered by certain medications.
- Early recognition of symptoms—fever, rash, and eye irritation—is crucial for minimizing damage.
- While rare, SJS carries a significant fatality rate, even with intensive medical intervention.
- Stopping the offending medication is vital, but existing damage may be irreversible.
Emily McAlister’s ordeal began 16 days after starting lamotrigine, when she noticed intense dryness, redness, and swelling around her eyes. Within 24 hours, disorientation, blurred vision, and a widespread rash erupted, quickly engulfing her entire body. Doctors diagnosed her with Stevens-Johnson syndrome (SJS) and immediately initiated intensive care.
The condition caused Emily’s facial skin to become necrotic, essentially melting away, creating a high risk of infection. Medical teams worked tirelessly to salvage as much healthy skin as possible, but ultimately, she lost roughly 87% of her total skin surface. Since 2022, she has undergone six eye surgeries in an attempt to restore her vision, alongside a stem cell transplant, a salivary gland transplant, and three uterine surgeries.
Today, Emily is legally blind. Her left eye has no vision, and her right eye retains limited sight only with the aid of a specialized contact lens. She reports having no prior history of vision problems.
“Stopping medication does not reverse the damage caused by SJS,” Emily stated. “This disease has lifelong effects.” She now lives with a disability, her daily life drastically altered, and emphasizes the need for greater public awareness regarding the potential for rare, yet devastating, side effects from prescribed medications.
Understanding Stevens-Johnson Syndrome
SJS is an exceptionally rare but serious immune reaction provoked by certain drugs. Instead of attacking external threats like bacteria, the immune system mistakenly targets the body’s own skin and mucous membranes. The condition typically develops within one to three weeks of starting a new medication and progresses rapidly, making prompt diagnosis essential.
Initial symptoms often mimic a common cold: fever, body aches, sore throat, and profound fatigue. These are soon followed by redness and pain in the eyes, swelling of the lips and face, and a red or purple rash. The rash spreads quickly, forming blisters and causing the skin to peel off, resembling a severe burn. Patients frequently describe the pain as an intense, internal burning sensation.
SJS doesn’t limit itself to the skin; it also affects the delicate mucosal tissues lining the mouth, esophagus, intestines, and genitals, as well as the eyes. This can lead to difficulty swallowing, painful urination, and, in severe cases, corneal damage, vision loss, and even blindness. Even after skin recovery, lasting vision problems or permanent scarring are common.
The primary culprit is usually medication. Common triggers include anticonvulsants like lamotrigine, sulfonamide antibiotics, certain painkillers (NSAIDs), and penicillin-based antibiotics. SJS isn’t caused by incorrect dosage or administration; it’s an unpredictable immune hypersensitivity reaction in susceptible individuals. Discontinuing the medication can prevent further damage, but existing harm is often irreversible.
A Rare But Serious Concern
SJS is a severe acute skin disease that continues to occur, including in Korea, as a result of drug side effects. Though infrequent, it’s considered one of the most dangerous adverse drug reactions in the medical field, occurring in fewer than 5 per million people. However, the fatality rate remains alarmingly high, ranging from 5-10% even with treatment.
Domestic research indicates approximately 234 cases of severe drug skin reactions, including SJS and toxic epidermal necrolysis (TEN), are reported annually. These cases result in an estimated 57 deaths each year. Despite the relatively low incidence, the severity and fatality rate demand serious attention. Anyone experiencing high fever, eye pain, mouth ulcers, or an unexplained rash shortly after starting a new medication should seek immediate medical attention.
