The exact number of Americans diagnosed with sickle cell anemia is unknown, according to the Centers for Disease Control and Prevention, which estimates that more than 100,000 African Americans in the United States are living with the inherited chronic blood cell disorder. There are about 3 million persons in America with the sickle cell trait.
The 2013 Global Burden of Disease Study reported 3.2 million people worldwide have sickle cell disease and 43 million have the sickle cell trait. The most common form of sickle cell disease is Sickle Cell Anemia; milder forms of the disease are Sickle-Hemoglobin C Disease, Sickle Beta-Plus Thalassemia and Sickle Beta-Zero Thalassemia.
To educate the population about the disease, September was designated as Sickle Cell Awareness Month. However, there are several familiar faces in the entertainment and sports world who have the disease or trait and advocate about sickle cell year round, such as actor Larenz Tate, former NFL running back Tiki Barber, entertainer Tionne “T-Boz” Watkins and NFL safety Ryan Clark, who has the trait.
While sickle cell disease can occur in people of all ethnicities, the highest frequency is among African Americans (1 in 365) and Hispanics (1 in 16,300).
When both parents have the sickle cell trait, there is a 50 percent chance that their child will have the trait, and a 25 percent chance that the child will have sickle cell anemia. There is a one in four chance that the child will have neither. A blood test can determine if you carry the trait.
Reports indicate that one in every 13 African-American babies are born with the sickle cell trait. Sickle cell anemia is usually diagnosed within the first year of life, usually around 5 months of age.
Bone marrow or stem cell transplant is the only cure for sickle cell disease. The disease can worsen over time.
Symptoms and medical issues include: arthritis, delayed puberty or growth, difficulty breathing, dizziness and lightheadedness, fast heart rate, fatigue, irritability, infections, jaundice (yellow color to the skin and whites of the eyes), pale skin color and vision loss.
To reduce the pain brought on my sickle cell, the following is recommended: drink plenty of water, avoid high altitudes, avoid low oxygen levels (intense exercise during military boot camp or athletic competition training) and keep your body temperature at a normal level (not too hot or too cold).
A medical professional might also prescribe hydroxyurea.
Tim White’s parents had the trait. White was diagnosed with sickle cell anemia at 9 months old. From that moment on, he underwent blood transfusions and suffered a series of medical problems and was placed on physical restrictions.
At 2, White had a tumor removed from his liver. At school age, he was not allowed to play sports because it would cause him to suffer a crisis.
“The first time I played sports, I suffered from severe pain throughout my body and it was difficult to breathe,” he said. “Many times I was taken to the hospital and remained for weeks at a time.”
He was home-schooled to avoid getting measles, mumps or chicken pox from other students.
When White turned 14, the doctors told him that he wouldn’t survive sickle cell anemia and his life expectancy was probably less than 10 years and fathering a child was impossible because of the medication and the side effects of the disease.
“I was devastated to hear this news but I continued to live my life as best as I could,” he said.
White was only 25 when he learned that he suffered from avascular necrosis, when the blood flow to a bone is interrupted or reduced, resulting in replacement of his right shoulder and both hips.
However, White was able to prove the doctors wrong. At 28, White fathered a son who is now 10 years old.
Along with the joy of fatherhood, his pain worsened as the years went by. At age 35, White was admitted to the hospital with pneumonia, bleeding ulcers and bacteria in his blood.
“The doctors placed me in an induced coma because my lungs were too weak to fight the pneumonia and other medical problems,” he said.
When White awakened from the coma, and after years of misinformation and other problems, he made a decision to establish a sickle cell anemia support system. As a result, he founded the Victory is Mine Sickle Cell Foundation in his hometown of Lubbock, Texas.
“There was no advocacy or support group in my area,” he said. “I had the time to form an organization because the pain from the disease caused me to lose my job because I was hospitalized often and unable to function.”
After three years in operation, his foundation has conducted sickle cell screenings, educational fairs, support group meetings and fundraisers to raise awareness.
White is a testament that sickle cell disease has many challenges but you can still live your purpose in life.
For White, it was establishing the foundation to raise awareness, educate the community, provide support and assist people with securing benefits needed to live a more productive life.
Sickle Cell Disease Association of America
Centers for Disease Control and Prevention http://www.cdc.gov/
Sickle Cell Care Coalition, (www.scdcoalition.org)
The American Society of Hematology (ASH) (www.hematology.org)
Marie Y. Lemelle, MBA, a public relations consultant, is the owner of Platinum Star PR and can be reached on Twitter @PlatinumStar or Instagram @PlatinumStarPR. Send “Health Matters” related questions to firstname.lastname@example.org and look for her column in The Wave.