The Fight for Sickle Cell Health
One person in 300 develops cancer each year in the United States. Auto accidents cause death for one in 9,000 Americans. Now imagine a deadly disease afflicting one in four Americans. That’s the alarming scale of sickle cell anemiain Nigeria, Africa’s most populous nation, where 25 percent of adults reportedly have the sickle gene. Around 150,000 newborns each year begin life with sickle cell, an iron deficiency that can cause illness, debilitation and death.
Modern medicines attempt to keep sickle cell symptoms at bay. So far, no cure for the disease exists. Aids, cancer and socially transmitted diseases eclipse attention the government pays to sickle cell. That’s not good enough, says Victoria Olorunmola, a relentless sickle cell advocate.
Instead of surrendering to overwhelming odds, armed with a 2012 degree in mass communication from Bowen University in Iwo, Osun State, Nigeria, Ms Olorunmola launched Folumy Sickle Cell Foundation. Its goal: prevent propagation of the sickle cell “ss” genotype prevalent in Nigeria and Africa, the reason for Folumy’s acronym — F(SS)F. To combat such a formidable foe, FSSF deploys a weapon it labels “BREACH” that stands for Broadcast, Reach out, Education, Advocacy, Counseling and, when needed, free or low-cost Health care services.
Because known gene combinations all but guarantee tragic consequences for children and families, Folumy preaches openness about sickle cell when friendships begin, not at the altar. If romance follows, at least couples will know what they are up against. When susceptible genes combine with predictable outcomes, says Ms Olorunmola, who lost a brother to sickle cell, “then you probably must adopt or if you are religious pray that a miracle happens.” She learned in University that she carries a propensity for sickle cell.
FSSF also mobilizes support aimed at finding a cure for sickle cell, forms alliances with like-minded NGOs and advises caregivers and victims on the means to manage crises and ease pain. It monitors progress in experimental stem cell transplants that post only a 50 percent survival rate. Ms Olorunmola wants to see survival rates exceed 90 percent.
What compels Ms Olorunmola to battle the sickle cell scourge? “I’m a very passionate person,” she told interviewer Jimoh Oluwatobi Segun on an NGOpodcast:
“I see a problem and the next thing I’m thinking of is what solution do we have? I don’t want to say I’m restless, but I am,” Ms Olorunmola declares. Defeating sickle cell is her major commitment. “It feels very daunting — but I believe it’s achievable.”