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Patient Stories

Tackling Stevens Johnson Syndrome

Researchers at Mass. Eye and Ear are committed to finding better treatments and cures for a serious, yet poorly understood, autoimmune disorder called Stevens Johnson syndrome (SJS). In honor of SJS Awareness Month, we highlight their important work and celebrate Katie—an SJS survivor and champion for a cure.

When Katie Niemeyer was 16 years old, she had an extreme reaction to a new medication. Within days, she was hospitalized with second and third degree burns covering her entire body and given only a 50 percent chance to live.

Katie was diagnosed with Stevens Johnson syndrome (SJS), a rare and life-threatening autoimmune disorder often caused by an adverse reaction to common medications including pain killers, antibiotics and antidepressants. Symptoms include excruciating burns, severe blistering, and sloughing and scarring of the skin.

Current treatments are limited to supportive care such as providing fluids and cleaning open wounds, while the condition is diagnosed through a skin biopsy test that can take several days to yield results—precious time that patients often don’t have. Up to 35 percent of adults and children with SJS do not survive, and those who do often suffer from debilitating lifelong complications.

Katie survived her experience with SJS, but not without lasting negative health effects. Decades later, she suffers from severe sensitivity and scarring to her eyes that impact her quality of life on a daily basis. Visual impairment, eye pain and blindness are long-term complications of the disease that are all too common. Eager to help the SJS patient community, Katie set out to find doctors and researchers working to prevent the disease and improve outcomes for survivors.

When Katie learned of the SJS research being conducted at Mass. Eye and Ear, she knew she had found the right place.

Scientists working together

Pioneers in the field

At Mass. Eye and Ear, James Chodosh, M.D., MPH, associate director of the Cornea and Refractive Surgery Service, and Hajirah Saeed, M.D., a specialist in the Cornea and Refractive Surgery Service who focuses her research on SJS, are launching one of the most robust SJS research initiatives worldwide. Their goal is to improve the prevention, diagnosis and treatment of the condition so patients will receive better care and live an improved quality of life.

Currently, there is much we do not know about SJS. We don’t know why some people are more susceptible to developing the condition or what causes the autoimmune reaction that leads to SJS. Because the condition is so rare, symptoms often go unrecognized. This delays diagnosis and treatment, which increases the chance of long-term complications and decreases rates of survival. Through targeted research and multi-institutional collaboration, Drs. Chodosh and Saeed are committed to changing that.

They aim to:

Prevent SJS – Target disease prevention by identifying people who are most likely to develop SJS

  • Define genetic factors that predispose a person to developing SJS
  • Alert patients to avoid specific medications that have a high risk of triggering the disease

Diagnose early – Identify unique biological indicators, or “biomarkers,” of SJS

  • Devise a rapid blood or urine test to detect biomarkers and enable early diagnosis
  • Allow for earlier therapeutic intervention, reducing long-term complications and increasing survival

Develop effective treatments – Develop therapies that target the root cause of SJS instead of treating only the symptoms

  • Save patients from experiencing prolonged pain and suffering
  • Minimize the risk of disease recurrence

Raise awareness of SJS – Educate both the medical and lay communities about SJS symptoms and supportive care

  • Collaborate across medical specialties and institutions to create universal awareness of SJS
  • Improve outcomes for patients at Mass. Eye and Ear and around the world

A champion for SJS researchSmile

Today, Katie is a committed patient advocate for SJS, raising awareness through public speaking and community outreach. She is also Founder and CEO of Handana®, a start-up that designs and produces high-performance wrist sweatbands. Katie created this product to protect her eyes from sweat while exercising, preventing the painful burning and sensitivity that resulted from her SJS.

Katie is also deeply committed to raising funds to support the research of Drs. Chodosh and Saeed. Through her personal CrowdRise page and various fundraising events, her goal is to raise $100,000 for Mass. Eye and Ear to help ensure that, one day, no one will suffer from the same painful experience she did.

To make a gift to support SJS research at Mass. Eye and Ear, please visit https://www.masseyeandear.org/online-donation-form or https://www.crowdrise.com/sjs-ten.

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