Sickle-cell anemia, which affects nearly 100,000 U.S. citizens, is one of the rarest but deadliest diseases among Americans, especially in the African-American community. Sickle-cell anemia is so common among African-Americans because the disease stems from a gene variant related to malaria found in people of Eastern, African, Indian and Mediterranean decent. Sickle-cell anemia, also known as sickle-cell disease, is a blood disorder that causes chronic pain and other serious infections. Someone with sickle-cell anemia does not have enough healthy red blood cells to carry oxygen throughout their body.
Normal blood cells are round and easily move through blood vessels. However, a person with sickle-cell anemia has irregularly shaped cells, or “sickle shaped” cells, that have difficultly flowing easily throughout the body. The sickle-shaped cells often block the flow of blood vessels, making it difficult for oxygen to reach the rest of the body.
Actor and personal trainer Ryan Gentles and his son, Jahquie, represent a family dealing with the sickle-cell disease. Their story is typical of what so many Black families must face. Gentles had no idea what the rest of his life would entail after his son was born with the disease nineteen years ago.
Jahquie’s doctors immediately knew something was wrong because he appeared to have a jaundiced look. They asked about the family history and decided to test Jahquie for the disease. Gentles was unaware that he carried the trait, but he traced it back to his family in Jamaica.
The sickle-cell trait usually occurs when a person inherits a sickle-cell gene from one parent and a normal gene from the other. When both parents carry the sickle-cell trait, there is a 25 percent chance that the child will be born with sickle-cell anemia.
Gentles admits that the disease wasn’t as bad during Jahquie’s early adolescent years. “You see how the disease manifests itself as he gets older,” he says. “The adolescent years of individuals with sickle-cell anemia can be challenging. Physically, they cannot keep up with normal kids their age, and the chances of them getting sick are far greater.”
While caring for a child with sickle-cell anemia, Gentles says that parents have to be conscious of everything they do—watch what they eat, drink and the type of environment they hang out in. Staying ahead of the weather is also part of maintaining sickle-cell anemia health.
“When he was younger, I made the mistake of taking him to the pool,” said Gentles, “and I didn’t realize that the water could have an adverse affect on him.”
Sickle-cell disease has a strong impact on the body. It can leave individuals hospitalized and in pain for days. A “sickle-cell crisis” is a painful episode that most sickle-cell anemia patients endure. A crisis occurs when the sickle shaped cells block the blood vessels, not allowing blood and oxygen to get to the muscles. This often leads leads to crippling pain for an uncertain amount of time.
The intensity of Jahquie’s most recent crisis caused him to suffer a stroke, which his father says has changed his life dramatically. He’s currently in a recovery phase, said Gentles, but “these kids have a lot to deal with, it’s two steps forward and one step back.”
Research for a cure is still being worked on across the country, but patients are relying on a series of treatments to help manage the pain of sickle-cell disease.
Hydroxyurea is a popular drug used especially in young children to help prevent strokes. According to Forbes Pharma and Healthcare, an experimental gene therapy created by Bluebird was administrated to four patients with only one doing fairly well a year after the procedure.
Gentles believes that sickle-cell disease is overlooked and isn’t on the radar for most people. “Our community really needs to be aware of the disease. We need to fund it, and we need to find a cure. We find cures for a lot of other diseases, but it’s like this one gets pushed to the back burner,” he said.
Gentles is doing his part to keep the community informed about sickle-cell disease and its affect on families. He’s been apart of several fundraisers, works closely with Interfaith Medical Center’s Sickle Cell Program and runs his Ryan Gentles Foundation to support the cause.
“We are trying to do things to make the public more aware of how it affects these kids,” said Gentles. “As a new parent you don’t know what’s ahead of you.”
Of what he’s learned about himself over the years helping his son deal with this disease, “You don’t take things for granted, don’t take life for granted, that’s the main thing. You try and help other people,” he said.
September is National Sickle Cell Awareness Month, where a walk is held to advocate awareness and support for sickle-cell programs and patients.
For more information for Ryan Gentles contact: zion4well5.rg@gmail.com