BENEFITING: Massachusetts Eye and Ear Infirmary
What if the medicine to heal you actually hurt you -- leaving you scarred, possibly blind or even, dead?
When I was 16, my body reacted to a new medication with familiar, seemingly benign allergic and cold-like symptoms – scratchy throat, itchy eyes, then a rash. Within days, I lay in a burn unit at Barnes Jewish Hospital, covered in second and third degree burns, a condition known as Stevens-Johnsons syndrome (SJS), which is caused by an adverse reaction to common medications. Over 200 drugs -- both OTC and RX -- have been identified as triggers for SJS, and the more severe form of the disease Toxic Epidermal Necrolysis (TEN), and these are familiar, oft-prescribed medications, e.g., allopurinol, NSAIDs, sulfonamide antibiotics, and anticonvulsants. I spent three weeks in the burn unit, fully bandaged, but conscious, as doctors and nurses gave me their best care and attention to stop the reaction, manage my pain and care for my burns, thus allowing my body to heal.
Doctors credit my youth for my survival. Surviving SJS-TEN gave me the inspiration to pursue a career in nursing including a graduate degree in anesthesiology. Yet SJS-TEN survivors live with many scars, both physical and mental. We work to overcome them and put them behind us. My eyes are highly sensitive and can be a source of excruciating pain, especially while exercising. Nonetheless, I am one of the fortunate survivors who is alive and can still see. Sadly, more than 25% of patients with TEN don’t survive; many who do are permanently blind.
In the last five years, I have begun visiting SJS-TEN patients in the hospital, talking to them and to their families to offer support and encouragement. One of the most devastating side effects of the disease is the loss of normal vision and even complete blindness. I began looking for researchers who care about the treatment of these patients. When I read about the work of Harvard Medical School doctors James Chodosh and Hajirah Saeed at Mass. Eye and Ear in Boston I knew that I could help them to make a difference.
In 2016, my family made our first major gift to help fund SJS-TEN research at Mass. Eye and Ear, where Drs. Chodosh and Saeed are launching a multi-institutional collaboration to advance research aimed at improving prevention, diagnosis and treatment. Creation of a national patient SJS-TEN database and bio-repository will fuel their research to help understand the disease pathology with the ultimate goal of developing an early diagnostic test for SJS-TEN and identification of at-risk patients before they take suspect drugs. They also aim to evaluate the efficacy of current treatments and develop more effective treatments to ensure fewer long-term complications of the disease.
To improve treatment for SJS-TEN patients, my family and I have established the Katie Niemeyer Research Fund at Mass. Eye and Ear. Our goal is to raise $100,000 to help the doctors and scientists understand SJS-TEN so that other people will not have to endure the painful experience that I did.
Please consider making a gift in support of this important research.
In August 2016, we will honor SJS Awareness Month.
Questions? Please contact me at email@example.com.