A Stevens Johnson Syndrome survivor living in Lacey, Wash. has established a Facebook support group for those who have also suffered through this painful skin condition and has also begun co-writing a book detailing her and other patients’ SJS survival stories.

Three years ago, Jamesy D. allegedly suffered from SJS, a severe allergic reaction that burned off a large portion of her skin. Jamesy’s SJS condition was allegedly set off after she consumed her epilepsy medication Lamictal, an anti-convulsive drug. Since surviving her 2011 SJS outbreak, Jamesy has stated that she is lucky to be alive, and her good fortune has sparked a passion to connect with fellow SJS victims.

According to news reports, Jamesy quickly developed a rash and lump in her throat after taking her prescription of Lamictal. Unfortunately, she was misdiagnosed twice with other conditions like laryngitis, while she continued to steadily decrease in health. After some time, her attending physician diagnosed Jamesy with Stevens Johnson Syndrome; however, by that time the patient’s SJS symptoms had worsened.

In total, Jamesy spent three weeks in the ICU, suffering from unbearable pain and needing constant monitoring and treatment for the burns that destroyed one third of the skin covering her face, abdomen, and back, with additional blisters covering her feet and hands. The SJS side effects got so bad that they even spread internally, causing Jamesy’s organ failure.

Even after surviving her bout with Stevens Johnson Syndrome with the help of a steroid treatment, Jamesy reportedly continues to suffer from SJS side effects, including: heart problems, increased seizures, eye damage, PTSD, fatigue and related skin issues.

Jamesy also claims, “I went from having no allergies for medications to a list of 10 that keeps adding up. I can’t put bandages on my skin because I’m now allergic to the adhesive.”

Jamesy is not the only patient to suffer from SJS as a result of taking an anti-epilepsy medication. In fact, many Lamictal and Dilantin SJS lawsuits have been filed in the past years by consumers who claim they too suffered from this debilitating allergic skin reaction after taking their prescription anti-seizure medication.

Dilantin SJS Side Effects

Dilantin is a widely-used phenytoin sodium anticonvulsant medication that, like Lamictal, is prescribed to treat seizures and epilepsy. Parke-Davis, a Pfizer subsidiary, created Dilantin in 1937 and eventually gained U.S. Food and Drug Administration (FDA) drug approval 1953. To many patients who constantly suffer from seizures or epilepsy, Dilantin is considered the tried and true anti-seizure treatment, especially given its 60-year history and use. However, recent studies and news reports have linked Dilantin and Lamictal with incidences of Steven Johnson Syndrome, a severe skin condition that can lead to sudden death.

When a patient develops SJS, a series of rashes begin to form on the skin and can quickly progress into a painful, burn-like state. As the SJS reaction becomes more severe, the topmost layer of skin cells die and fall off exposing the deeper, more sensitive skin layers and the delicate mucous membrane exposed to infection. In extreme Dilantin SJS, a patient may undergo so much trauma from the skin reaction that they may die.

Some symptoms and side effects of Dilantin Stevens Johnson Syndrome to look out for in patients include:

• Painful blistering of the skin and mucous membrane involvement.
• In many cases preceded with flu like symptoms and high fever.
• As it evolves, the skin literally sloughs off.
• Ocular involvement includes severe conjunctivitis, iritis, palpebral edema, conjunctival and corneal blisters and erosions, and corneal perforation.

There are currently over 100 Dilantin SJS lawsuits awaiting trial in federal courts across the nation.