Inside a Battle for Life from Stevens Johnson Syndrome

October 2, 2014, 8:00AM. By Gordon Gibb

Winton, Bournemouth, UKIt’s been little over a year since a five-year-old boy from the UK found himself in the hospital, near death. The reason? Stevens Johnson Syndrome, a rare condition that results in severe rash, blistering and expulsion of large swaths of skin not unlike a serious burn. Patients can be left with permanent scarring, both emotional and physical.

Some do not survive at all. MailOnline (9/30/14), the online portal for the venerable Daily Mail, notes that if left untreated, SJS can result in death in 40 percent of all cases.

Stevens Johnson Syndrome was first identified in 1922, and named after the two physicians who discovered it. SJS remains rare: according to the MailOnline report, Stevens Johnson Syndrome affects about two individuals per million and is reported to be more common in women. That said, SJS can and has affected children.

Like Ellis Stacy. The five-year old, who suffers from epileptic seizures, experienced one on his first day of school in September 2013. His doctor had prescribed Tegretol (carbamazepine) to mitigate his symptoms, and he was confined to his home to rest.

Within days, the boy had developed Stevens Johnson Syndrome rash. His GP, according to Ellis’ mother, Kayleigh Drayton, was not concerned - but Kayleigh sought a second opinion. The second doctor suspected Ellis was having a serious allergic reaction to the Tegretol he had been given earlier. Stevens Johnson Syndrome was, as yet, not on the radar.

Nonetheless, Ellis was soon in the hospital, fighting for his life.

Taken initially to Poole Hospital in Dorset, the little boy was transferred within two days to Southampton General Hospital for more expert care. That’s where the diagnosis of SJS was made.

Inside a Stevens Johnson Syndrome battle for life is painful, and not just for the patient (who is often sedated), but especially for the parents, who are helpless yet try to remain strong for their child as the painful and tragic drama unfolds before their eyes.

Ellis, with blisters inside his mouth, was unable to eat and was soon connected to a feeding tube. His Stevens Johnson Syndrome symptoms required a morphine drip to ease the pain. The young boy was pumped with steroids in an effort to treat the reaction. Eye drops were applied in an effort to save his sight, and dressings were changed every two hours. His eyes and lips were kept lubricated in an effort to protect his eyes from scarring and his lips from fusing together.

Ellis himself was oblivious to most of this; such was his response to the morphine for pain. “He was completely out of it,” his mother told MailOnline, adding that “I couldn’t even hug him, as his skin could have fallen off in chunks.”

At one point, Ellis’ parents were informed by doctors that their son might not make it into the following week, so severe were his Stevens Johnson Syndrome symptoms.

The photographs, showing the extent of his Stevens Johnson Syndrome skin disease, are painful to look at.

The story however has a happy ending. Three weeks after going into the hospital Ellis was able to return home, and a year after his ordeal appears fully recovered.

The manufacturer of Tegretol, the drug suspected of causing SJS in the boy, issued a statement which said [Novartis Pharmaceuticals UK Ltd. is] “committed to patient safety and strictly [complies] with local and international regulations. Serious dermatological reactions, including Stevens-Johnson syndrome (sic), have been reported very rarely with Tegretol.

“For all of its products, Novartis evaluates and reviews its global safety database on an ongoing basis.”