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Turning Things Around

PROSE patient and SJS survivor Kelli, with her daughter

Patient: Kelli Fox
Diagnosis: Toxic Epidermal Necrolysis (TENS)
Sight restored: July 2010

Last Sunday Kelli developed a fever.

DAVID’S JOURNAL

MARCH 22

She toughed it out for a couple of days, but Monday night she called me (I was at a conference in Atlanta – my first trip away from her and Zoe in two years) and said I might need to come back if she didn’t feel better in the morning.

MARCH 23

Tuesday night she developed a rash on her back. It extended to her arms and face later in the night. By early Wednesday morning it was looking pretty bad and she was feeling even worse, so we went to the hospital.

A fever of 106.5°
Antibiotics
Big doses of steroids
Morphine for the pain

Kelli and David, successful Internet entrepreneurs and the parents of a two-year-old daughter, Zoe, were living a happy life. Out of nowhere, Kelli, 36, contracted toxic epidermal necrolysis syndrome (tens), a rare disease thought to result from an adverse reaction to medication or a virus — or some combination of the two. In Kelli’s case, the cause would remain unclear, and the next six years would prove to be a monstrous ordeal.

A sky-high fever and painful rash that would soon cover 70% of Kelli’s body landed her in intensive care. An alert resident recognized the condition, which has a frightening mortality rate of 30-40%. The rash had begun to blister, and the top layer of her skin was sloughing off; infection was a deadly threat. TENS, a severe form of Stevens Johnson syndrome (SJS), also attacks the mucous membranes, including the ocular surface of the eye, causing extreme pain, ulcerations, light sensitivity, and potentially blindness.

David, a self-professed geek, went into overdrive, surfing the web for leads on effective treatments for this mysterious condition. He found an Internet user group whose members urged him to make sure that Kelli’s eyes were looked after. They also told him about a specialist in Miami who could advise on amniotic membrane transplantation to save and possibly rehabilitate her corneas. Kelli’s medical team was hopeful and, in consultation with the specialist, performed the surgery twice in six weeks.

MARCH 25

The doctors had pretty much worked out that this was classic TENS (toxic epidermal necrolysis syndrome) and suggested we either transfer to intensive care or move to the burn center of a local hospital.

Click here to continue Kelli's harrowing ordeal.