Stevens Johnson Syndrome: What Is It and Why Should We Be Informed?

Since many patients arrive at BostonSight for PROSE treatment to alleviate persistent ocular symptoms from Stevens Johnson syndrome, we see firsthand their daily struggles with the aftermath and feel strongly about our dedication to SJS support, advocacy, and education.

Steven Johnson syndrome is a rare illness and likely not familiar to many. It is a severe autoimmune reaction to a medication or virus. Stevens Johnson syndrome and the more severe variant of the disease, TENS (Toxic Epidermal Necrolysis Syndrome), primarily affect the skin and mucous membranes, including the eyes. Symptoms of the disease include rash, persistent fever, blistering, eyelid swelling and redness, and flu-like symptoms. Early treatment is critical to survival and to minimize the long-term impact from this disease. Treatment involves stopping the agent suspected to cause the reaction and providing supportive care, typically in a hospital burn unit. After recovery, survivors often continue to struggle for the rest of their lives with ocular problems, scarring of the skin, lung damage, fatigue, joint pain, and scarring of mucous membranes.

Because SJS is considered a rare illness, attempts at verifying accurate incidence rates are difficult. A longitudinal review of patient records has shown a rate of occurrence at 4.2 per 106 person-years. Older and younger people are at greater risk and show incidence rates as high as 7.0 per 106 person-years for those under age 20 and 9.4 per 106 person-years for ages 60 years and older. Health-care professionals suspect that more recent data and improved reporting of adverse medication reactions might indicate even higher rates.

Severe ocular disease occurs in 27 to 50 percent of SJS/TENS patients. BostonSight PROSE treatment has been very successful in helping patients overcome the dry eyes, eye pain, light sensitivity, and corneal erosions that can result from SJS. A survey of BostonSight patients revealed that 90% reported significant success with PROSE and 100% reported moderate or significant success. It is gratifying to be able to help so many who have been affected by SJS/TENS.

The SJS Foundation is a great resource for support and information and has led the way in advocacy and education about SJS/TENS. You, too, can get involved to help raise awareness of this life-altering disease and help support SJS patients and their families. Each year, patients from around the United States petition their governors to proclaim August as SJS awareness month in an effort to help increase awareness. Is your state included? Here’s a sample letter you can modify to make sure your state is included this year. In addition, the SJS Foundation has initiated a petition to request mandatory reporting of adverse drug reactions. This mandate would allow for a more accurate assessment of SJS/TENS occurrences and improve labeling of medications that have a higher incidence of adverse reactions. Please consider adding your voice to this important initiative.

Has SJS/TENS touched your life? Please share your story here with us.


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