after suffering a severe reaction to antibiotics prescribed for acne.
This is the story of her remarkable recovery.
Written by Elizabeth Swaringen for the UNC Medical Center News Office
CHAPEL HILL, N.C. – 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!"
Note: A photo of the family featured in this story is available at http://www.unchealthcare.org/site/newsroom/news/2009/October/fhd6
