Division of Blood Disorders
I was diagnosed with sickle cell disease at age 3. One day at the beach I got sick and remained sick, and nobody knew why. I was tested for every possible disease, including leukemia. Then another family member suggested that I should be tested for sickle cell. When the results came back positive, no one was more surprised than my parents. Neither of them knew they carried the trait.
Sickle cell has affected my life in many ways. Many people are not aware of the physical limitations that the disease can cause. In elementary school, I had to participate in a running endurance test for physical education. This caused a major pain crisis, and I missed the rest of that school year. I’m fortunate that I have a milder form of the disease, and I’m typically completely healthy, but sickle cell is a disease that can flare up at any moment for seemingly no reason. Once during midterms in college, I landed in the hospital. Even though I had university health insurance, I was told I had a pre-existing condition, and my stay there was not covered.
Although there have been many challenges, I have always thought of my disease as a blessing. It has molded my life and made me who I am. My life’s passion is to raise awareness of the disease and to help increase quality of life for people who have it. I’m proud that I get to work on something so personal to me every day, and I’m glad CDC is now working to close the many public health gaps found in this disease. My parents were very scared when they discovered I had sickle cell. Back then, surviving past the age of 40 with full-blown sickle cell disease was highly unlikely. But now, if a person knows how to manage the condition, he or she can live a long and productive life.
- Centers for Disease Control and Prevention
National Center on Birth Defects and Developmental Disabilities
1600 Clifton Road
Atlanta, GA 30333
TTY: (888) 232-6348
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