Treatment includes first, stopping any current medication, and then, the administration of therapies to help control symptoms. Patients may be given antibiotics, pain medications, oral steroids, or immune globulin. Other supportive care may include wound care, fluid replacement, eye care, and nutritional support. Healing can take months, and for the most severe cases, SJS can be fatal. It is clear that more treatment options are needed for this patient population and more research is needed to understand the underlying cause of this disease.
Researchers, patients, and families recently came together to discuss the direction of future research for SJS, announce the latest discoveries, and share stories and experiences.
This meeting was co-chaired by the John A. Oates Chair in Clinical Research at Vanderbilt University, Elizabeth Phillips. It was held in Vancouver, Canada on April 26th and 27th thanks to funding by the NIH, Murdoch University, the FDA, and the Canadian Institute for Health Research.
42 survivors and families attended. Included in the meeting was a special session which allowed survivors and families of patients who had lost their battle with SJS to tell their stories. Patients discussed their struggles with a wide range of topics including depression, reproductive difficulties, and blindness. These testimonies were an essential part of the meeting, as researchers understand the reason for their research all comes back to the patients.
Phillips says that they are making steady progress in the research of this disease, evaluating genetic markers which could help predict risk, uncovering new diagnostic strategies, as well as investigating new treatment options. While it’s still a mystery why exactly SJS occurs, researchers are hoping with an improved diagnostic timeline and improved therapeutic options, patients with SJS could begin to have better outcomes.
You can read more about this meeting on SJS here.