Best Life: California teen shares his journey after being diagnosed with Loeffler’s syndrome

California teen shares his journey after being diagnosed with Loeffler’s syndrome

STANFORD, Calif. (Ivanhoe Newswire) -- Loeffler’s syndrome is a serious, but rare respiratory infection that can take doctors months to diagnose. In the most severe cases, that critical time can lead to organ damage.

Chow Mein with extra veggies is Justin Wang’s signature dish. The 16-year-old is so into cooking that he’s even written a cookbook. A big deal, considering that up until a few months ago he was on a GI feeding tube.

“My health growing up wasn’t the best," said Wang.

Wang’s mother, Yang Wei, told Ivanhoe, “When he was barely two years old, we felt something was terribly wrong with him.”

Rashes and a fever were a few of his symptoms, but it was a blood test that led doctors to a diagnosis of Loeffler’s syndrome.

“Loeffler’s is super rare and it’s a blood disorder when you have too much oesenphile which is a type of white blood cell," said Wang.

Seth Hollander, MD, a Pediatric Cardiologist, Medical Director, Pediatric Heart Transplantation at Lucile Packard Children’s Hospital, Stanford said, “One of the many problems with having this disease is that these cells can build up in the heart and cause the heart not to function well.”

A chemotherapy drug was able to slow down the disease, but not before his heart started failing. At age six, Wang had the first of two open heart surgeries.

“But we knew from a pretty early age that at some point he was going to have to have a heart transplant," said Dr. Hollander.

That reality came last just year.

“My health was decreasing at an exponential rate," said Wang.

“Justin was really lucky. He was only on the heart transplant list for 17 days before we found a donor,” said Dr. Hollander.

“His life is a miracle," said Wang’s mother.

Dr. Hollander said “Out of the over 400 transplants we’ve done here, he is the only child with Loeffler’s syndrome.”

Wang said, “I still have Loeffler’s syndrome to this date, but it’s being very controlled. And it’s going to be alright from now on.”

Loeffler’s syndrome can affect other organs besides the heart, including the lungs and liver. Wang is now focused on educating others about it and encouraging organ donation with his blog – https://myhearttransplantjournal.com/

Copyright 2019 WMC. All rights reserved. Contributors to this news report include: Jennifer Winter, Field Producer; Cyndy McGrath, Supervising Producer; Rusty Reed, Videographer; Roque Correa, Editor.