CLEARWATER — From the beginning, Anthony Battle was told he was going to die young.
But Battle never took those words to heart. His family watched him endure excruciating pain and spend many of his school years in hospital beds. They seldom heard him complain.
Battle was born with sickle cell anemia, an inherited disease that affects mostly African-Americans. He's now 36 years old.
"I was told I wasn't going to see the age of 13, then 18," said Battle, who lives in Clearwater. "But it depends on the person. Most of my friends with sickle cell died in their early 20s. Having a terminal disease and having people telling me I'm going to die at a certain age, it's very emotional because they don't know your time limit on Earth."
His mother, Hattie Battle, wishes she had known about the disease before her youngest child was born.
"Testing is important because I didn't know anything about (sickle cell anemia) until it happened to me," Hattie Battle, 66, said. "Our parents didn't even know what it was. They had never heard of it before, and I had never heard of it. And not to know that my husband had a trait and I had a trait … they didn't do testing back then."
September is Sickle Cell Anemia Awareness month, and the Sickle Cell Disease Association of Upper Pinellas/Pasco/Hernando will host a golf tournament Saturday to raise funds to spread awareness about the disease. Hattie Battle is president of the association.
"It's important to get the word out to let people know that we have people in our community living with this terminal disease," she said. "People didn't talk about sickle cell when Tony was young. I thought he was the only child in the entire Tampa Bay area that had it."
Battle said things have gotten a little better, "but it's not as open as it should be."
"We don't get the research funding like cancer, HIV and those diseases," Battle said.
Sickle cell anemia is contracted when both parents carry an abnormal hemoglobin gene, which is called sickle cell trait. People with sickle cell trait do not develop sickle cell disease as they grow older and generally have no symptoms.
Ira Bragg-Grant, executive director of the American Sickle Cell Anemia Association in Cleveland, Ohio, said screening is critical.
"The importance of testing for sickle cell trait is that, should they mate with someone else who has the trait, they have a 25 percent chance in each pregnancy of having a child with sickle cell anemia," Bragg-Grant said. "They should be tested to make educated decisions about families. But no one can say that because you carry a disorder of any type that you can't have children."
If both parents have the trait, there is a 50 percent chance of having children with the sickle cell trait and a 25 percent chance of having a child without the trait, Bragg-Grant said.
The odds went against Anthony Battle, who is one of five children. He is the only one to have the disease.
Sickle cell anemia gets its name from the shape of the abnormal blood cells it produces.
Normal red blood cells are disc-shaped and move easily through the blood vessels carrying oxygen from the lungs to the rest of the body.
In patients like Battle, blood cells are sickle-shaped. Such cells are stiff and sticky, form clumps and get stuck in blood vessels, blocking blood flow. Blocked blood vessels can cause pain, serious infections and organ damage.
According to the National Institute of Health, sickle cell disease occurs in about 1 in every 500 African-American births and 1 in every 1,000 to 1,400 Hispanic-American births. About 2 million Americans, or 1 in 12 African-Americans, carry the sickle cell trait. More than 70,000 people have sickle cell disease.
About 1,000 babies are born with the disease each year in America and the average life expectancy is now in the mid 40s, according to the National Institutes of Health. There generally is no cure; a bone marrow transplant defeats sickle cell in a small number of cases.
Anthony Battle has been married to Tara for six years. The two have been together for 11. She has four children from a previous relationship, and none of them has sickle cell anemia.
"Sickle cell doesn't change who the person is," Tara Battle said. "I love him. He's always been a good and passionate person, and he gave me what I was looking for emotionally."
But Tara said it's been difficult watching her husband suffer.
"It's harder now because sometimes people don't understand the pain he's in," she said. "And it's getting harder, especially with so many people now faking pain to get medicine, it makes it harder for people like Tony."
Anthony said he has about two to three crises a month.
"Anything can send me into crisis: the weather, the air, not getting enough oxygen to my lungs, being hot, dehydrated, being around people who are sick," Battle said. "I get sharp pain in my joints, elbows, wrists, knees, ankles, chest and abdominal pain. It's just pain all over. But it's been like this all my life."
Battle had another crisis last Friday evening and had to be hospitalized. He was released from Mease Dunedin Hospital on Thursday.
He has no regrets and no complaints.
"If God would have given it to someone other me, they wouldn't be able to handle it," Battle said. "I'm sick. I'm still human. I'm still going on."
Demorris A. Lee can be reached at firstname.lastname@example.org or (727) 445-4174.