Survivors of Stevens Johnson Syndrome (SJS) often do not get to leave the disease behind them once they’ve stabilized. Many complications from SJS can permanently decrease quality of life.

Stevens Johnson Syndrome and related disorders like Toxic Epidermal Necrolysis (TEN) are autoimmune reactions. This means that in SJS and TEN, the body’s own immune system misfires, and attacks its own skin.

SJS symptoms start with generalized, flu-like symptoms. However, SJS rapidly escalates to a painful skin rash with blisters, sores and ulcers. The damage can spread to the eyes and the surface of internal organs. The most extreme cases evolve into a related disease called Toxic Epidermal Necrolysis. TEN is a culmination of SJS symptoms, with dead patches of skin sloughing off. Both SJS and TEN can be fatal, with the mildest SJS cases having a mortality rate of 5 percent, and the most extreme cases of TEN having a 40 percent mortality rate. But even survivors face a lifetime of complications.

SJS and TEN can cause permanent damage to the skin. Scars from SJS are not just disfiguring, but can actually be debilitating. Massive scars can decrease range of motion. Additionally, such scars can cause damage to skin pigments, causing permanent changes in skin color. This can include a splotchy appearance where pigment becomes unevenly distributed across the skin. Additionally, SJS can destroy the nail beds, the growth site of finger and toe nails. While it sounds more unsightly than disabling, this can have a huge impact on a person’s ability to grasp and use tools.

One of the more common complications of SJS and TEN is blindness. Many cases of SJS spread to the eyes, causing painful damage to the cornea. This can cause permanent blindness. Some cases can be corrected by surgery, but sometimes SJS symptoms damage the eye beyond repair. Often, blindness or decreased vision can prevent survivors from working, causing them to lose wages. A milder type of eye damage, called “dry eye syndrome” can leave the eye fragile and vulnerable to further damage.

SJS and TEN can also cause many types of internal damage. Decreased kidney function can leave patients feeling constant fatigue. Additionally, damage to the breathing pathways can sensitize lung tissue to allergens, causing acquired asthma. These conditions can require lifelong medical monitoring.

SJS lawsuits seek to recoup the costs of medical care and other costs related to SJS and TEN. Since the vast majority of SJS cases are linked to various drugs, SJS lawsuits may be filed against drug makers, alleging that pharmaceutical companies have not done enough to protect the public from the risk of these reactions. Such SJS and TEN lawsuits may seek to cover the cost of lifelong monitoring, emergency medical care, or lost wages/income potential due to disability.