Family House Diaries: Going Forward in All New Skin

20-year-old Caitlin Hughes of Charlotte lost 90 percent of her skin after suffering a severe reaction to antibiotics prescribed for acne. This is the story of her remarkable recovery.

Finally, 20-year-old Caitlin Hughes’ acne is gone. But getting her new skin nearly killed her. 
A reaction to an antibiotic of last resort – prescribed to rid the University of North Carolina junior from Charlotte of life-long acne – caused Hughes to contract Stevens-Johnson Syndrome (SJS), a rare disorder in which skin and mucous membranes react severely to medications or infection. 
But Hughes’ diagnosis was even more worrisome – a severe form of SJS called Toxic Epidermal Necrolysis (TEN) – meaning that at least 30 percent of her skin was blistered, dying and shedding.  Her skin sloughing progressed rapidly to ultimately involve more than 90 percent of her entire body.
The medical emergency landed Hughes in the N.C. Jaycee Burn Center at UNC Hospitals.  About 50 of the nearly 800 patients admitted to the burn center annually are SJS/ TEN patients because their damaged skin and membranes mimic that of burn patients.
"This is a mysteriously devastating disease,” said Bruce A. Cairns, M.D., medical director of the N.C. Jaycee Burn Center. “Patients can present with a rash and within 24 hours nearly all of their skin can slough off. And sloughing can affect other mucosal surfaces, including the mouth, the respiratory tract, the gastrointestinal system and the eyes.” 
Fortunately, TEN is relatively rare – about three in a million – but can develop as a severe reaction to a number of medications. In the most severe cases, the mortality rate from SJS/TEN can be as high as 30-50 percent.
The principal treatment is essentially supportive, Cairns said, meaning that, “We have to let the disease run its course and help support the patient during that crucial time. Sometimes it takes weeks, but many times it takes months. In Caitlin’s case, once she began to improve, she healed rapidly, and she was out of the hospital in weeks.”
Caitlin believes her near-record recovery speaks to the “developed expertise and innate compassion” of her health care team. “I’ve never seen people smiling more when they should be crying,” she said.
Caitlin had planned to spend the fall term in Chapel Hill pursuing her psychology major and continuing a research project about non-suicidal self-injury among girls.  That after a six-week, eye-opening summer study abroad in genocide-ridden Rwanda.
Physically, she was in the best shape of her life, returning from Africa to work out regularly at the YMCA. She delayed the new acne regimen until after Rwanda because she thought the vaccinations required for life abroad might interfere with its effectiveness.  It was a decision that saved her life.
“I would have been on the plane when the rash began, and I would have died because the rash and blisters moved with such speed,” Caitlin said.   
Mid-August back in Charlotte, the rash started as three dots on Caitlin’s right wrist, spread to her stomach, into her mouth, down her throat and into her esophagus. Her vocal chords were damaged.  She was hospitalized on Aug. 16, had a breathing tube placed in her throat to keep her airway open and was placed in a medically induced coma so that she was unaware of the pain of losing nearly all her skin. 
Her head was shaved to manage the blisters on her scalp.  Within three days of having 30 percent abrasions on both corneas, her blistered eyes healed, her sight returned and her depth perception is improving. Only her hands and feet escaped the shedding skin.

“The fact that her hands and feet were spared gave her a head start on rehabilitation because she didn’t have to relearn how to use them,” said Pam Hughes, Caitlin’s mother.  “We have seen so many miracles with her, and God’s hand at work in so many ways.”
While Caitlin was hospitalized, her parents stayed at the SECU (State Employees’ Credit Union) Family House, a 40-bedroom hospital hospitality house minutes from UNC Hospitals that provides comfortable, convenient and affordable housing for adult patients undergoing treatment for critical illness and trauma and their family member caregivers. 
“SECU Family House offered an excellent respite from being at the hospital all day,” Pam said.  “Despite the circumstances, I am glad I was able to be with Caitlin almost non-stop for a month.  We cannot say enough good things about the house and staff, most of whom are volunteers.” 
Caitlin joined her mother at SECU Family House on Sept. 16 for three weeks of outpatient rehabilitation before returning to Charlotte on Oct. 9.  Earlier that week, she was strong enough to participate in a Fellowship of Christian Athletes outing that involved a rigorous scavenger hunt.  Caitlin’s team earned second place and best group picture honors.   
“She’s always been my independent child, the fighter,” Pam said.  “I now know that was God preparing her for overcoming this illness.  She was in God’s hands, she got excellent medical care, and she had a strong will to survive.  Her world is big, and she will be off to tackle it.”
Caitlin plans to be back in Chapel Hill as a student when the spring term begins in January.  And she plans to stop by the Burn Center to see her new friends there and talk with the families of SJS patients to help ease their journey.
“Caitlin’s recovery is the kind of result we would love to have every time,” Cairns said, adding that Caitlin will continue to be followed closely for any potential long-term problems related to TEN.
“I left the hospital with a shaved head, a tracheotomy scar, a bum shoulder from some nerve damage, and all new skin which is clear and smooth,” Caitlin said. “I survived and I’ve got lots to accomplish. And when I’m 40 years old, my skin will just be 20!”

Written by Elizabeth Swaringen for the UNC Medical Center News Office