This Young Surfer Received Groundbreaking Care at Nemours

Katelyn Sewell thought she'd never surf again, but after groundbreaking surgery at Nemours, she went to the NSSA National Championship.

Katelyn Sewell started surfing when she was eight years old. It was something she did with her father, and she quickly grew to love it. But it hasn’t always been easy for Sewell. Her experience with chronic illness has been a constant thorn in the side of her surfing career.

“It was around 2017 or 2018,” Sewell explains. “We went out to surf and I couldn’t paddle out or anything.”

She knew something had to be wrong. Her hemoglobin was low, and she needed a blood transfusion. The symptoms developed gradually and, without any significant family history of chronic illness, Sewell and her family missed a lot of the warning signs. She needed a second blood transfusion just a couple of months later.

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This set off a series of emergency room visits, medical consultations and a long chain of doctors telling her they were stumped. They didn’t know how to help long-term, so they did their best to manage symptoms as they arose with lifestyle choices and countless prescriptions.

Sewell continued to struggle with her health throughout high school. She experienced symptoms like excruciating headaches and nearly 40 pounds of extra water weight, causing her legs and ankles to swell. At the worst point in her illness, her lungs also filled with fluid and she was diagnosed with pneumonia. After years of struggling, she was referred to a doctor at Nemours.

Pre-surgery & post-surgery. Courtesy of Nemours & Katelyn Sewell.

At Nemours, Dr. Rabinowitz, MD, diagnosed Sewell with a very rare condition called intestinal lymphangiectasia, a type of protein-losing enteropathy. Luckily for Sewell and others like her, Nemours has dedicated countless hours to research this rare and complex disease.

“It’s so amazing. It’s such a rare disease, and the fact that there are people out there that are working on this…figuring out more about this disease and helping people with it is just amazing,” Sewell notes.

Dr. Rabinowitz and the medical team at Nemours performed two life-saving surgical procedures on Sewell, making her one of only two people to receive this groundbreaking surgery. She hasn’t had any of her old symptoms since receiving care, and her quality of life has improved immensely.

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“I could not be more grateful for Dr. Rabinowitz and everybody at [Nemours] for how amazing and accommodating they were. I do not know where I’d be if I hadn’t gone to Delaware.”

The National Scholastic Surfing Association (NSSA) held the 2023 East Coast Regional Championship in April. Sewell competed and won the college women’s division. She then competed in the National Championship in California. Now, with the worst of her health struggles behind her, she looks forward to continuing to hone her skills and surf throughout college.

 

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Sewell hopes that others in her position hear about the work Nemours is doing and realize that they have options for a healthier life. She also hopes that those in similar situations find the strength to continue on and live their lives to the fullest.

“Everyone goes through hard times, but not at the same time,” Sewell says. “Don’t compare yourself to others and don’t be too hard on yourself. There were times when I wanted to stop surfing. With all this health stuff, I almost let it get the best of me, but I’m so glad I didn’t.”

Related: What to Know About Endometriosis, According to a Delaware Expert

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