One in 12 African Americans are born with the sickle cell trait.
Florida A&M University junior Victoria Alaka learned this while volunteering with the Sickle Cell Foundation.
After two of her cousins passed away due to sickle cell disease, Alaka decided to start volunteering with the foundation. She made a choice to pursue pharmacy, hoping to use her doctorate to enhance or create medications that can alleviate sickle cell symptoms.
“I felt like I needed to take some kind of action because I was tired of this disease taking away my family members,” said Alaka. “Even if I don’t beat it, an increase in life span would be a great accomplishment too.”
Sickle cell disease is an inherited blood disorder; this disease causes red blood cells to become sickle or crescent shaped making it difficult for blood to pass through. There is a difference between sickle cell trait and sickle cell disease. People with the sickle cell trait will never get the disease but they can have similar complications at times.
Symptoms of sickle cell disease consist of infections, pain in your joints, fatigue and dizziness. According to nhlbi.nih.gov, crises (pain episodes) can occur at any moment and any time. Crises can be brought on by, illness, change in the weather, stress, dehydration, and being at high altitudes.
This disease can create many health problems like, anemia, organ damage, and jaundice. People have described these pain crises as intense, sharp, and throbbing. It is said that severe crises can be even more uncomfortable than post-surgical pain or childbirth.
“I sometimes had setbacks in school because of my pain crises, but I try to just live a normal life like everyone else,” said Ernest Johnson, a FAMU alumnus.
Unfortunately, there are no standard treatments that cure sickle cell disease. However, there are several medications and treatments that can help people cope and live with the disease. Medications can help alleviate pain, prevent infections, and minimize organ damage. Treatments can include bone marrow transplants, IV therapy, oxygen therapy and blood transfusions.
Devard Darling, retired National Football League wide receiver, is president and founder of the As One Foundation.
Darling attended FSU until the death of his identical twin brother, Devaughn Darling. Devard recalls his brother fainting after a long and exhausting practice; he was having sickle cell complications due to overexertion and dehydration.
“We found out we had the trait during our physical for freshman year, I didn’t realize how big of a deal it was until after his death,” said Darling. “It’s so un-spoken of in our community and with this foundation I hope to bring more awareness.”
SwaggerScan, an up and coming app created by Dia Hicks, is the world’s first socially responsible dating service. It allows individuals to “Always Scan Their Swagger,” an expression that means to always get tested, always know your partner’s status, and always use condoms and contraceptives.
Hicks came up with the idea after finding out that the love of his life carried the sickle cell trait, just like him. Her mother informed him that they could not get married because their children could inherit the disease.
“I was devastated. I called to God and the idea immediately came to me,” said Hicks. “Everyone should be tested and with this app it’s easier to find spouses that are clean without asking the awkward question.”
The Sickle Cell Foundation provides different services, from free screenings to support groups. They have teamed up with other foundations and companies like the As One Foundation and SwaggerScan, to help inform and educate the community about the disease/trait.
These foundations want to bring awareness and help enable individuals with sickle cell to live a full and prosperous life as best as they can.
“More awareness can bring more funding, and ultimately lead to more lives being saved,” said Johnson.