When Candice Deler speaks of sickle cell anemia, the words come from the heart — and a lifetime of personal experience.
The Bronx woman, a longtime advocate for those suffering from the disease, was diagnosed with the incurable blood disorder as an infant. The married mother of two teenage sons launched her “Candice’s Sickle Cell Fund” campaign two decades ago, emerging as a local advocate for the estimated 100,000 Americans living with sickle cell.
Deler, a nominee for the Daily News Hometown Heroes award, aims to comfort the afflicted by providing scholarships to students with the disease along with healthy meal deliveries, spa days and trips to the New York Botanical Garden for adults and families affected by the painful ailment.
“Our decisions all day are focused on our illness,” she explained. “We just want to give people a moment to smile, and not worry about it. That’s the uniqueness of our program.”
In addition to the scholarships, the fund hosts at least one annual fund-raising event, makes an annual donation to support research and runs small community-based events to benefit those with sickle cell.
During the pandemic, Deler helped conduct virtual events to assist sickle cell patients stranded in their homes.
The Stony Brook University graduate works with other New York community-based organizations to improve conditions for sickle cell patients in city emergency rooms and to establish a specialty center to treat them.
The scholarship fund’s first effort provided $1,500 in financial aid to three students, the number climbing to 10 in 2020. Past recipients also receive a $500 annual boost to help with the cost of their educations.
The ailment is particularly prevalent among African-Americans, with one case on average in every 365 Black births, according to the Centers for Disease Control. The national agency noted that people with SCD have less access to comprehensive team care than people with genetic disorders such as hemophilia and cystic fibrosis.
“You know, they call this orphan disease because it doesn’t get a lot of attention,” said Deler. “People go to the ER, and they’re not given what they need before they’re discharged. Sickle cell is a crisis through the whole body.
“It’s a tough battle, and our organization makes itself available.”
Jean DeVeaux, the best friend of Deler’s mom, has known the health care activist since she was an infant and marvels at her efforts.
“She is an outstanding individual,” said DeVeaux. “If I could stand up on the Empire State Building and scream out her name, I would. So many people don’t know how many African-American people are suffering from sickle cell.”
While there is no cure for the disease, treatment can relieve pain or help prevent complications associated with sickle cell. Deler said part of her mission entails spreading the word about exactly what sickle cell anemia is, including visits to speak with medical students where she often fields “tons of questions.”
Deler, a Black woman identified at birth with sickle cell through a newborn screening program, faced medical issues from the start, including high fevers and pneumonia. Her spleen was removed at age 7, and she endured her first pain crisis a year later.
“I still live in pain every day,” she said. “I just want people to feel like they’re normal.”
Do you know a Hometown Hero? Every Monday, the Daily News will run a feature in print and online profiling a Hometown Hero in several categories — first responders (police officers, firefighters, EMTs), health care workers, transit workers, educators and extraordinary everyday citizens — nominated by our readers.
The top nominees will be presented with a Daily News Hometown Heroes Award and honored in a special section twice a year.