Q: When were you diagnosed with sickle cell disease?
A: Sickle Cell Disease is a genetic blood disorder, so I, like many patients, was diagnosed via amniocentesis (a prenatal medical test that can diagnose certain genetic conditions) during my mother’s pregnancy. Both of my parents were unaware of their sickle cell trait status until they were pregnant with me. This fuels my passion for helping people become cognizant of their sickle cell trait status so that, when family planning begins, they are fully informed of health risks.
Q: Where did you grow up and how did your family help you to manage your condition?
A: I am originally from Kalamazoo, Michigan, but I was raised in Union City, Georgia, and Fayetteville, North Carolina. My family is great when it comes to helping manage my disease. My mother cared for me exceptionally well, and she also let me know that I can do anything anyone else can. I never had the notion growing up that I couldn’t do something because of my condition; I just knew that my disease may slow me down from accomplishing it in the time others would. My mother allowed me to do what most other kids did, and I would often forget that I even had sickle cell until I got sick.
Q: What should people know about this chronic disease?
A: First and foremost, sickle cell disease does not exclusively impact blacks. This disease is genetic and does not discriminate based on race or ethnicity. Although most patients with the disease in the United States are black, the global burden of the disease accounts for a diverse population.
Additionally, there are several emotional, cultural, mental and social implications of this disease. Many patients feel they are burdens to their families, and they have a hard time finding love, because it’s difficult for their potential partner to understand or be willing to deal with the totality of this disease. People with this condition suffer from countless inequities in the health care field. Bias, discrimination, prejudice and racism are a pervasive part of our health care system, and many patients experience poor health outcomes due to this reality. Because of these issues, a patient’s mental health is impacted, causing thoughts of suicide. Many adult patients with this disease have a difficult time adjusting to adulthood, and this transition period can be the deadliest time for sickle cell patients.
Q: How do you describe to friends what sickle cell is like for you?
A: I describe a sickle cell crisis to my friends like ice flowing through your veins cutting your vessels as it flows.
Q: Do you recall a story where someone didn’t understand your chronic condition?
A: Sadly, I encounter a lot of miseducation and ignorance about my condition in various health care settings. Providers and nurses have told me that I do not look sick, and I have been accused, on several occasions, of being a drug seeker because I requested narcotic medication to treat my pain. Family, friends and others compare sickle cell disease to cancer, or to HIV/AIDS, trying to make a claim that I am not really sick if I do not have these diseases. I also have experienced roadblocks from social security and insurance agencies because they solely evaluate sickle cell disease based on lab results. They don’t understand the long-term effects that make sickle cell disease an inherent disability.
Q: Does your disease limit you?
A: Yes and no. My disease has limited me in the past. However, because I refuse to let it stop me from accomplishing what I have set my heart to do, it has not. My education would be a prime example. I graduated from high school and started my undergraduate collegiate career in 2007. In less than two years, I became ill and ran into financial issues – I couldn’t continue. Now, I am finishing up my undergraduate degree, and I will be applying to graduate school this fall. My disease has limited me; however, I have always challenged the limits and still managed to accomplish my goals.
Q: What is your underlying philosophy about dealing what life has handed you?
A: I do not take no for an answer. I believe that if you continue to follow your dreams, you will find the right avenue for you to explore. Many of the successes and the triumphs that I have recently experienced were dreams I had decades ago, but then they weren’t meant for me to pursue. It’s all about divine timing. I keep a positive attitude because my philosophy informs: “Be grateful, because there’s someone else worse off than you. Be grateful, because someone else would love to be in your shoes…” (song lyrics from “Be Grateful” by Walter Hawkins). These lyrics mean to me that you should never complain, because someone would love to have the life you live, even when you think it may not be going like you think it should.
Q: Could you describe the importance of chronic disease advocacy for you, personally?
A: Advocacy is important because policymakers are often uneducated about chronic diseases and their impacts. They rely on advocates and lobbyists to educate them and vote on behalf of patients. It is important to advocate for the rights of the entire chronic disease community and not just for yourself.