LINDEN — Joyce Fitz is a 17-year-old Linden resident living with a rare condition.
Shwachman-Diamond Syndrome affects an estimated 2,000 Americans, occurring in approximately one in 80,000 newborns. SDS is a genetic disorder characterized by bone marrow failure and the inability for the pancreas to process fatty food.
“It’s not painful,” said Joyce, who received the genetic test at 19 months. She said, as a baby, she was eating and never full. “I just lived with the disease,” she said.
With the exception of seeing specialists multiple times a year, Joyce said she had “somewhat of a normal childhood.” Having a compromised immune system, she had to be extra careful.
“I take pills before I eat,” she said. “Maybe five or six pills before a meal. It’s an enzyme. It replaces the enzymes my food doesn’t make.”
Joyce has been advocating for SDS for years. And on Friday, March 20, Congressman Tom Kean Jr. and Congressman Josh Gottheimer introduced a bipartisan resolution designating Nov. 7 of each year as National Shwachman-Diamond Syndrome Awareness Day.
In a press release, Kean said, “For those living with incredibly rare conditions like SDS, shining a spotlight is the first step toward promoting research and advancing treatment. “Joyce Fitz, a Linden resident, has dedicated herself to fighting for recognition for her community and, when she came to my office with this idea, it was clear we needed to spread awareness on the national level. Every individual living with SDS deserves to have their daily fight recognized and I am proud to lead this bipartisan effort to make that a reality.”
Joyce feels her story is able to make positive change. “It’s an awesome opportunity,” she said.
There’s an online support group for people with SDS called Camp Sunshine, which is located at Sebago Lake in Maine and also provides in-person retreats for families affected by SDS. Joyce said, “We all suffer through the same burden. My story can have a positive impact on the world. I wasn’t just a little girl in the hospital.”
Joyce’s next plan is college. She is going to New York University next spring to get a degree in public policy.
In the meantime, she has a very full life. “Part of me is: I live a tough life with my disease. The life expectancy is 35. I like to ride horses. I volunteer at Legacy Riding Stables every Sunday, in Sayreville. I’m a performer. I sing and do musical theater, cabaret in New York City. I have a voice teacher.”
Her inspiring spirit trickles down to others, as she had served as a mentor to raise other young advocates.
Photo Courtesy of Joyce Fitz
