For as long as I can remember, surfing has been my first love. Having grown up on the North Carolina coast, I spent all my free time at the beach catching waves and hanging out with friends. This was my happy place, but, ever so slowly, I would spend less time in the water as my life began to change.
In 2018, when I was 14, my dad and I decided to go surfing. We had surfed together many times before, but this time was different. It was the strangest feeling. I couldn’t paddle out— and I wasn’t sure why. My mom took me to an urgent care and my hemoglobin was very low. I was severely anemic and spent the next 4 days in the hospital getting blood transfusions. We didn’t really think much about it and thought it was a one-off incident, until it happened again 2 months later.
No one seemed to know what was wrong with me. I had a lot of colonoscopies, endoscopies and even surgery—without any answers. As time went on, I continued to have bouts of severe anemia that required ongoing blood transfusions. I developed cankles and gained weight. I struggled because I didn’t feel normal.
In 2021, I started my senior year in high school and that’s when my symptoms worsened. I started having horrible GI problems that were seemingly attributed to foods with high fat content, so my doctors put me on a low fat, high protein diet. Even though I ate almost no fat, I continued to gain weight. I would try to go surfing, but I was so sluggish and tired, that I stopped trying. Then I was diagnosed with pneumonia; my lungs were filled with fluid. I developed deep vein thrombosis in my brain that triggered excruciating headaches. I was severely anemic, and my albumin was dangerously low. I was admitted to the pediatric intensive care unit where I would spend the next month.
I was discouraged. I didn’t look like myself; my eyes were swollen almost shut. I didn’t recognize my bloated body and I couldn’t fit into my clothes. I was giving myself shots every day and taking lots of medications from diuretics to blood thinners. Despite it all, I was determined to take control and not let this illness disrupt my life any more than it already had. I had wanted to go to school in Florida, so I moved to Saint Augustine to attend Flagler College.
My symptoms continued, so I went to see a doctor in Florida that was closer to my college at Nemours Children’s Health in Jacksonville, Florida. Eric Sandler, MD, Chair of Pediatrics, started managing my care. After several episodes of worsening symptoms and treatments, Dr. Sandler referred me to Deborah Rabinowitz, MD, Chief, Interventional Radiology and a national lymphatics expert at Nemours Children’s Hospital, Delaware. Dr. Rabinowitz diagnosed me with a very rare condition called lymphangiectasia, a type of protein-losing enteropathy. It turns out that I was losing albumin-the one protein you can’t lose, nor can you live without. Dr. Rabinowitz found the areas of the bowel that were leaking lymph and blood into the GI tract. She embolized them with glue using minimally invasive techniques. I have had two embolization procedures and finally feel well again! Since then, I have been going to concerts, traveling, and doing amazingly well in school!
I’m back to surfing, too! On March 3, 2023, I won the National Scholastic Surfing Association College Women’s Division! On June 16, I will be competing in the NSSA National Championships in California. I can’t wait!
A note from Dr. Rabinowitz
Our retrograde transendoscopic technique of embolizing enteric lymphatics is completely new and developed at Nemours. It has been used for Cardiac patients with lymphatics but only 2 patients and only at Nemours, as far as I know in non-cardiac PLE patients. Because this is a completely new procedure, we don’t know her long term outlook but it’s possible that this never bothers her again (we hope). It is extremely rare for anyone with PLE to undergo a therapeutic intervention and these patients have mostly been treated with medication/infusions.
