PORTSMOUTH, Va. (WAVY) — Imagine being wracked with pain so badly, you cannot get out of bed. That’s how it is for some children and adults in Hampton Roads who suffer from sickle cell anemia. It’s an inherited disease of the blood that causes red cells to change into the shape of a sickle, harden, and clog blood vessels.
That leads to debilitating pain, and sometimes death.
One therapy that helps ease the pain and restore health involves a blood transfusion. And, right now, American Red Cross officials say supplies are dangerously low.
“I am one of the few sickle cell patients that needs a blood transfusion every week,” says 29-year-old Dayshana Jones from her bedroom at a local hospital.
16-year-old Tymiere Grayson of Norfolk was also in a hospital room when he spoke by Zoom. He says he first saw his diagnosis as a burden. “[It was] something I truly didn’t like and didn’t like to say I had and I kept it secret from a lot of friends.”
For some, sickle cell disease has far worse consequences.
“I had a daughter that passed away from sickle cell disease,” says Toni Cartwright Moore. And for the past several years, Moore has been a staunch advocate for patients and families.
Judy Anderson of the Sickle Cell Association of Hampton Roads says about 100,000 people nationwide have the disease. About 2,500 are in Virginia and about half live in Hampton Roads. And, Anderson says, while
children can find knowledgeable health care providers at Children’s Hospital of the King’s Daughters, many adults have to leave the area.
“A number of our patients are going to Richmond for their health care.”
And for those who can’t work steadily, she says travel can be expensive.
Dianne Creekmore, who had two adult children and one grandchild with the disease, would like to see sickle cell experts located here in Hampton Roads.”
“Young adults with sickle cell, they age out of the comprehensive pediatric clinics and coverage, and then they need the adult comprehensive care,” Creekmore said. “We do have a few doctors who will take them on as patients. But, we need to establish a dedicated sickle cell disease clinic for adult patients.”
15-year-old Ayana Johnson of Suffolk proudly wore a Miss Piedmont Pageant shoulder-to-waist banner and crown for the interview.
This sophomore at Suffolk’s Nansemond River High School says winning the title will enable her to speak to a broader audience in upcoming Miss America qualifying pageants about the needs of sickle cell patients.
“I remember when I was in the hospital around 8 years old, I was getting a check up. And I remember seeing the incongruities in information provided for oncology patients versus hematology patients. And that little girl at 8 years old wanted to change that and have something to do with making sickle cell more known.”
“Miss America is giving me the opportunity to talk about something that I’ve always been passionate about.”
Johnson says sickle cell patients such as herself desperately need people to donate blood.
“Due to COVID-19, there’s been a huge blood shortage in the community. So, more people getting out there, donating blood is extremely important.”
Out-of-pocket hospital expenses, plus travel costs, are some of the biggest burdens for sickle cell patients, Anderson says.
There is no cure, yet, but Anderson is hopeful as research into a cure is non-stop. And that takes money.
If you’d like to support efforts to find a cure, better treatment, and day-to-day expenses of patients and the organization, contact Judy Anderson at 757-466-0332.