Medical practitioners dread the possibility of Stevens Johnson Syndrome (SJS), because of its fast progression and severe consequences. One woman had experienced this, and is now on a personal mission to connect with other Stevens Johnson Syndrome survivors.

Three years ago, Jamesy D. developed SJS, and has been traumatized ever since. She is now taking her experience to the public. She is currently running a Facebook support group for SJS survivors, and is in the beginning stages of co-writing a book that will detail these different Stevens Johnson Syndrome recovery stories.

Jamesy tells her story in detail, stating that it began in 2011 when she suffered a severe allergic reaction from the epilepsy drug Lamictal. Soon after ingestion, a rash developed in her throat that led to several misdiagnoses, which allowed her condition to worsen. Eventually, Jamesy’s doctor properly identified her ailment as Stevens Johnson Syndrome, and immediately sent her to the intensive care unit. During the three weeks she spent there, she suffered extreme pain and watched while a majority of her skin detached from her body and prepared for the doctor’s expected prognosis of organ failure, common SJS side effects.

Reportedly, one third of her skin had sloughed away including from her face, abdomen, and back, with blisters scoured over her hands and feet. While Jamesy survived her ordeal, she is now forced to contend with a variety of new health conditions because of the effects left behind by SJS. She now has a heart condition, an increased amount of seizures, optical nerve damage, post-traumatic stress disorder, constant fatigue and additional skin-related problems.

Overview of Stevens Johnson Syndrome

Stevens Johnson Syndrome is extremely rare, as it only occurs from a bad reaction to one or more medications. Lamictal is one of the most commonly named medications in SJS injury reports, for which much scrutiny is placed towards its manufacturing company, GlaxoSmithKline (GSK).

SJS is famously characterized by red or purple skin lesions that appear across the body, which can cover up to 30 percent of skin surface area. It is important to note that if a patient were to come down with SJS, the onset would be very quick and would start with flu-like symptoms. Due to the nature of the injuries SJS patients suffer, patients often need to be treated with skin grafts to replenish lost skin and are housed in burn units.

There are approximately 300 cases of SJS diagnosed per year in the United States, meaning it is exceedingly rare to medical professionals. Therefore, unless a doctor has encountered SJS before, it is unlikely they will properly diagnose the condition. There is currently no way to predetermine if patients are susceptible to SJS, but it is reportedly more common in women than men.

This information reportedtly did not reach Jamesy’s physician in time, which allowed for a significant portion of skin loss. While she is forced to live with her new conditions, she is making an effort to reach out and create a community for herself and fellow Stevens Johnson Syndrome survivors. This new support system could be vital for many SJS victims who are left devastated by the condition.