Stevens-Johnson Syndrome

Stevens-Johnson Syndrome (SJS), also called erythema multiforme major, is a disorder of the skin that can also affect the eyes.

Stevens-Johnson syndrome (SJS) is a rare, yet serious autoimmune disorder that is most often caused by a reaction to common medications, including pain killers, antibiotics, seizure medications, and antidepressants. The condition can also be preceded by a viral or bacterial infection, such as herpes or mycoplasma. SJS affects males and females of all ages, with young children and the elderly often developing fatal complications.

Early signs of SJS include flu-like symptoms, followed by an often excruciating burn-like rash that spreads over the skin and mucous membranes of the entire body. Patients typically experience extreme blistering, bleeding wounds, and sloughing and scarring of the skin. Long-term complications may include permanent vision loss, eye pain, and blindness, in addition to chronic genitourinary, pulmonary, and gastrointestinal complications. Current therapies are limited to supportive care, such as providing fluids and cleaning open wounds. Sadly, SJS causes unnecessary deaths of children and adults each year.

People with SJS have severely diminished health and quality of life and are in dire need of better care and effective treatments. Clinician scientists at Mass. Eye, including James Chodosh, MD, MPH, and Hajirah N. Saeed, MD, are conducting important research that aims to improve diagnostic tests, treatment options, and prevention strategies for patients with SJS.  


Mass. Eye and Ear Goals for Advancing Care

1. Prevent SJS

Identify potential risk factors for SJS, such as genetics and family history. High-risk patients can then avoid specific medications that are likely to trigger SJS.

2. Diagnose Earlier to Prevent Complications and Chronic Disease

Develop a quick, inexpensive test to detect SJS in its initial stages, enabling early diagnosis and treatment. Current skin biopsy tests can take up to five days to yield results, delaying diagnosis and treatment.

3. Develop Effective Treatments

Develop new treatments to target the root cause of the disease and save patients from experiencing prolonged pain and suffering. The effectiveness of current treatments will be evaluated through clinical trials of patients with SJS.


Our Plan

Build a National Patient Database and Biorepository

  • Record clinical information on patients with SJS to identify patterns in symptoms, medication use, lifestyle, and other factors that may inform prevention, diagnosis, and treatment
  • Build a biorepository of tissue and biological samples collected from SJS patients that can be used for research

Launch a Gene-Sequencing Research Initiative

  • Perform genetic sequencing on more than 800 patients to identify heritable risk factors and develop a better understanding of the disease pathology
  • Identify biomarkers unique to SJS that can be used to detect disease in its early stages.

Lead a Multidisciplinary, Multi-institutional Collaboration

  • Collaborate with specialists in emergency medicine, dermatology, burn surgery, and gynecology to gain a holistic understanding of the causes, current standard of care, and treatment of SJS
  • Work with hospitals and medical centers both nationally and internationally to recruit SJS patients to contribute to the database and biorepository

Raise Awareness

  • Educate the medical community about early symptoms of SJS and appropriate supportive care, particularly ER and burn unit doctors who are most likely to be on the front lines of care for these patients
  • Engage in community outreach and target physicians through conference presentations and research publications

How You can Help

Join us in aggressively pursuing prevention and treatment for children and adults who have been diagnosed with or who are at risk of developing SJS. To fully fund the Mass. Eye and Ear SJS research program, we must raise $3 million over 5 years. Charitable gifts of all sizes will make an important difference.

If you would like to learn more about how you can help, please contact Melissa Paul, Chief Development Officer at (617) 573-4168 or Melissa_Paul@meei.harvard.edu or make a gift at www.MassEyeAndEar.org/donations.