New procedure for rare condition gives hope for others with Protein-Losing Enteropathy
PHILADELPHIA (CBS) – A college surfer with a rare condition is back to hanging ten after having a new surgical procedure developed for her by doctors at Nemours Children's Hospital in Delaware.
The condition is difficult to diagnose and the treatments are limited, but the team at Nemours has come up with a unique new approach that has a very grateful surfer singing their praises.
"The conditions will always be different. It's something new every day," Katelyn Sewell said.
The 19-year-old is a competitive surfer who was recently in the National Interscholastic Championships.
"It's definitely not the easiest sport," Sewell said. "There can def be setbacks and stuff."
However, her biggest setback was a medical mystery that started when she was 14. There was swelling in her face and legs from 40 pounds of water weight, and she was exhausted and plagued with headaches and stomach trouble.
"I had tried so many different treatments," Sewell said. "It was basically trial and error, but nothing was working."
She was eventually diagnosed with a rare disease in her lymphatic system called Protein-Losing Enteropathy (PLE), where protein in the blood leaks into the bowel.
"Every day, we're making new discoveries," said Dr. Debbie Rabinowitz, a nationally recognized lymphatic expert at Nemours Children's Hospital.
Sewell was sent to Dr. Rabinowitz, where they devised a unique treatment where the surgery is guided by a live x-ray. Sewell had two of these procedures.
"With a very small camera that goes thru mouth [and] into the bowel, we were able to identify the exact spots where it was leaking and put a very small needle thru that camera and block off those areas," Dr. Rabinowitz explained.
Now, Sewell said she finally has her life back.
"Just how successful it was, it means so much to me," she said. "It's absolutely amazing."
Sewell is back to surfing, and while she said she feels cured, her doctors aren't sure.
"To see the change in the quality of life is fantastic," Dr. Rabinowitz said. "This is completely new technology -- completely new procedures -- so we don't really know in the long term.
Sewell will be monitored and watch out for symptoms, but there's a chance the cure will last and can be used on others in the future.