For some families, SCD is a taboo topic, not often discussed internally and certainly not outside of the family. But throughout his childhood, Clifton’s parents and pediatric hematologist encouraged him to talk about his disease, normalizing it as much as possible. Clifton credits this upbringing with helping him to become the person he is today. “It’s up to the parents in terms of how their children will respond to them having this illness and whether they’re going to be independent,” he says. “It has everything to do with family support.”
Because of this early support, Clifton’s passion for sickle cell advocacy has grown over the years. He feels there is a lot of room for improvement in multiple areas, including treatments for adults. “We all know that the pediatric side of sickle cell is wonderful,” he says. “But the adult side is horrendous.” As children, SCD patients receive care from a team of physicians; however, that is not the case for adults.
Additionally, because many people with SCD experience excruciating pain crises, they seek relief in the form of prescription painkillers. But because of the color of their skin, SCD patients are discriminated against, branded as addicts, just for trying to ease the pain caused by a debilitating disease. “We talk about health disparities that come into play. For us, there is no hiding the reality of it, because it’s considered a disease that Black folks have,” Clifton says. “There’s been this gap all of these years. As a kid, you don’t notice it. But as an adult … it’s blatant racism. It’s a complete war that we’re fighting, because it’s on so many levels.”
By being an advocate and sharing his story, he hopes to inspire others to do the same. “I try to use my platform and use my skill set to get into these spaces so that I know more and so that we can do more,” he says. “It is so important for us to get these stories out, because people still don’t know. This isn’t a one-person illness, in a sense. Yes, it affects me, but it also affects everyone else who is around. There is a need for this conversation.” Moreover, he hopes that the next generation of sickle cell warriors won’t have to go through what he has. “Many of us don’t want the generation after us to go through the hell of it,” he says. “Parents need to teach their warriors how to be aware and how to be an advocate.”
To manage his disease, Clifton receives monthly blood transfusions, which have led to high iron levels and a number of antibodies in his blood, often making it difficult to find matching units. Going forward, he hopes to host blood drives and dispel some of the myths surrounding donating blood in the African American community. “Blood transfusions helped eliminate me being in so much pain and having to go to the doctor as much as I used to,” he says. “But there is still that mistrust among Black people.” He hopes to help people understand that the blood that is donated today helps patients tomorrow. “We don’t all have the same story, but we could. What I go through now, you could go through in five years.”
But most of all, Clifton hopes to be a beacon of hope to other patients with sickle cell disease. “Over my life, I’ve found out how much I inspired people and didn’t even know.”
People need people, make a difference in someone’s life by donating blood.
We must rely on each other for the gift of blood, and patients in your community rely on the generosity of Versiti’s blood donors to help. Please consider scheduling an appointment to donate. If this is your first time, donating blood is quick, easy and relatively painless. And, it is a great way to give back and help patients in your community.