By Rebecca Henely
About 60 people marched from York College to Roy Wilkins Park Sunday to bring attention to a disease they say does not get the attention it deserves.
“We do walk around with a deadly disease,” said 57-year-old former Hollis resident Marvin Thompson, who has sickle-cell anemia. “It may not be like cancer but, believe me, it’s worse.”
Hosted by the Queens Sickle Cell Advocacy Network with assistance from the North Shore LIJ-Medical Center and civic groups, the walk was intended to raise awareness of the disease and money for research. Sickle cell anemia is a genetic blood disease that causes the circular red blood cells to become sickle-shaped. This can result in joint pain and can lead to further complications that could result in death.
“This is the most common genetic disorder there is, and yet there seems to be limited awareness and funding,” said Dr. Barbara Barnett of LIJ.
Led by volunteer Larry Love, the Jamaica walk began near the college on 160th Street between Archer and Liberty avenues, turned left on Liberty Avenue and right on Merrick Boulevard, ending at Roy Wilkins Park near 116th Avenue.
Walkers chanted, “We need your help for sickle cell” and, “Sickle Cell Awareness Month,” which is September. This is the sixth-annual walk the network has held.
“The important thing here is to find a cure,” Love said.
Jamaica resident Erica Bell, 28, was diagnosed with the disease when she was 2 months old. Her brothers Jemel and Antione, who also had sickle cell anemia, died at 3 and 10 years old due to the illness. Bell said she takes many medications to manage the disease and once was in a coma as a result of it.
“A lot of people, they underestimate sickle cell,” Bell said.
Bell came with her daughter, 8-year-old Aniyah Dunn, and said this is the fourth year she has participated in the walk. She said she wants to see more information tables at health fairs about the disease and said many people she meets ask her to define sickle cell anemia.
Thompson, who was diagnosed at 6 months, said he also wants increased education about the sickness.
“It’s a disease that’s been out far longer than cancer or HIV,” he said.
Dr. Rajasree Roy of LIJ said both research and care are lacking for the disease, which can cause chronic pain.
“This is a disease of lifelong suffering,” she said.
Love, whose best friend has the disease, said he is planning additional events such as bingo nights and music shows to raise money and people’s knowledge of the disease.
“I keep saying awareness, because I was unaware for so many years,” Love said.
Reach reporter Rebecca Henely by e-mail at rhenely@cnglocal.com or by phone at 718-260-4564.
