Sickle cell disease is more than just a medical condition… it’s a lifelong journey. Also known as sickle cell anemia, it is a genetic blood disorder that primarily affects people of African ancestry. According to the National Institutes of Health (NIH), sickle cell disease affects more than 100,000 people in the United States and 8 million people worldwide.

In sickle cell, red blood cells are crescent moon-shaped instead of round, which disrupts the flow of oxygen to the entire body. This causes serious health problems and severe pain.

Like many patients with sickle cell disease, Alexandra depends on blood donors to live. Alexandra was diagnosed with sickle cell at 6 months old, and has received dozens of blood transfusions to combat the crippling pain brought on by the inherited blood disorder. People with sickle cell disease may need as many as 100 units of blood each year.

Alexandra

Now, Alexandra relies on blood exchanges to improve her quality of life and keep her out of the hospital. During the procedure, Alexandra’s sickled blood cells are replaced with healthy donor blood. Blood exchanges have given Alexandra a new lease on life. And it wouldn’t be possible without the generosity of blood donors!

In honor of World Sickle Cell Awareness Day on June 19^th, we caught up with Alexandra to learn more about her perspective on living with sickle cell. She shared her experiences and insights in the hope of offering comfort and guidance to others navigating life with this disease.

1 What do you wish more people understood about sickle cell disease?

We can prevent more sickle births if we prioritize our health. Starting with knowing our genetics and blood type. Ask your doctor. With ongoing research, there are many more options available in either curing sickle cell or making life a lot more manageable with it. Know yourself and take advantage. You deserve a good life, too. You have sickle cell, you are not sickle cell. Be in control. 

2 What helps you stay positive or hopeful during tough times? 

I am able to remain positive by remembering everything I overcame to have a more comfortable life. I tell myself there’s more to look forward to.

Alexandra and her son

3 What advice would you give someone who was newly diagnosed? 

You’re living in a time where there are so many resources, remedies, and treatments that are available for sickle cell patients. Take advantage of them, listen to your doctors, do the research, and fight for yourself so you can be in charge of your health. Don’t let sickle cell make you believe you can’t have a happy and healthy life. 

4 In honor of World Sickle Cell Day, what would you like to tell blood donors about how they are helping people with sickle cell disease? 

Because of blood donations, a lot of people are being given a second chance to live a life outside of hospital walls and pain. The blood we receive allows us to pursue a quality of life. 

5 Fun Bonus Question: Do you have any fun summer plans?  

I plan to go to New York for a month to spend some time with my mother and family. I’ll get to watch my son practice for football during summer camp. I truly cannot wait. 

Raising awareness about sickle cell disease isn’t just about understanding a diagnosis. It’s about recognizing the individuals affected. Be a sickle cell hero—join Alexandra and OneBlood by donating blood today!