By Rosaland Tyler
New Journal and Guide
Can you walk around the Dick Price Stadium at Norfolk State on Sept. 19 and actually help someone who suffers with sickle cell anemia?
The short answer is yes. The long answer is, well, complicated. The problem is children are born with sickle cell disease. It is not contagious. But since about two million Americans are born with the sickle cell trait yet live longer, everyone who strolls around the stadium will help about 100 clients in Hampton Roads who receive aid from the Sickle Cell Association Inc. The non-profit’s annual walk will be held from 9 a.m. to 11 a.m. A health and awards ceremony will follow from 11 a.m. to 1 p.m. in the Gil Gymnasium.
“If you come to the walk, you will walk away with a great feeling,”
said Sickle Cell Alliance Chair Al Steward, a member of the board of directors. “Our goal is to raise funds to support programs and to make the public realize this is still a prominent disease in our community.”
“There are those including some in the medical community who do not understand what sickle cell patients go through,” said Stewart who has volunteered at the nearly 43-year-old local non-profit since 1993. “Often sickle cell patients are labeled without understanding. Some call them lazy because they don’t have any energy after they experience an episode and are unable to function like others. Sickle cell is very draining.”
“People should come out and join in the walk because this is a significant event that helps many,” Stewart said. “It is also a lot of fun.”
But if you have the sickle cell trait, it is not too much fun. It includes countless trips to the emergency room, debilitating pain, recurring infections and organ damage. The genetic disorder causes red blood cells to assume an abnormal sickle shape, making it difficult for blood to flow through vessels and deliver oxygen throughout the body
While new treatments such as blood marrow transplants, early intervention and newborn screenings have helped turn this disease, which was once a death sentence, into a manageable chronic illness.
“It is a lifelong disease,” said Judy Anderson, who has served for nearly 39 years as the executive director of Sickle Cell Association Inc. in South Hanpton Roads. “And that leads to the fundraising effort we are having.”
In short, better treatment is leading to longer lives. “But because sickle cell children are now living into their adult years, they have expansive needs,” Anderson said. “Now that they are living longer, they have to come off of their parent’s insurance, get coverage on their own, find a job, and navigate the system.”
“They must not only navigate the system but deal with pain on a consistent basis,” Anderson said. “We have not been able to eliminate the pain that they suffer; but we are trying to eliminate the stereotypes many of our clients face. For example, they take narcotics to deal with the pain. But the body builds up a tolerance so they need stronger pain medication. Sometimes, those in the medical profession stereotype these patients and say they crave and want the narcotics. They say they are not in pain.”
And this is where that stroll around the stadium comes in. Previous walks have raised nearly $30,000. The proceeds from the walk provide monetary donations, food assistance, health care, medical co-pays, and scholarships.
But since the non-profit is still recovering from losing 80 percent of its budget that came from the United Way about five years ago, this event is critical. It is one of several fundraisers held each year. The non-profit also sponsors a banquet in Suffolk in March, and a gala in November in Virginia Beach.
But those funding cuts five years ago – well that’s the bad news. The good news is about five years later the non-profit opened a new office in Suffolk on Sept. 1 at 509 E. Washington St.
“Our No. 1 goal is to establish relationships with the community and partners in Suffolk, as well as clients to make them aware that we are here,” said Francine Jackson, finance director.
“You should come to the walk because the association assists families who are affected by sickle cell,” Jackson said. “We want to make the community aware of how the sickle cell trait affects persons in our community.”
State Senate Candidate Gary McCollum will be the grand marshal for the annual stadium walk. For more information, please phone 466-0332 or go online to www.Firstgiving.com/sicklecellhr.
To contact the new office in Suffolk, please phone (757) 618-0455.