Lena Harvey is the only person in her family who has sickle cell disease (SCD). Growing up, she didn’t have the energy to run around and play with her cousins, and by fourth grade, she had already had at least one death scare. It was difficult for her to articulate what she was going through, and as the only child of a single mom, she spent a lot of time alone. “I was in pain a lot—more than any child should be in pain,” she says. “I retreated inward. It was very lonely and isolating.”
Despite her SCD diagnosis, Lena excelled at school and made plans for the future. She was determined to pursue a career as a chef and attended Sullivan University for culinary arts, a shorter program that she believed wouldn’t take a toll on her health. “I was too sick to do much of anything else. I wanted to prove to myself and everyone else that I’m normal—that I can get an education,” she says. “I’m smart, I’m a regular person; I just happen to have sickle cell. For the first time, I was doing something that was my own.”
But things weren’t always easy for Lena. Being on her feet all the time led to one of the worst pain crises of her life. “I had an unrealistic idea of how sick I was,” she says. “I didn’t know my body could hold that much pain.” She spent more than a week in the hospital and faced ignorance and racism from the healthcare team. “It was the worst moment in my life. There was no sympathy; I was alone in there,” she says.
After college, Lena got a job as a prep cook; however, because the job was so physically demanding, she was forced to quit after a few months. “I was in way too much pain; I was pushing myself to the brink,” she says. “That was an extremely heartbreaking period; I felt useless.”
Finally, after years of taking heavy painkillers to manage her chronic pain, Lena’s hematologist put her on Oxbryta, a new medication to manage her disease. “It legit changed everything. Within a week, I was no longer in pain, I was awake, I was no longer so chronically fatigued that I had to sleep all the time,” says Lena, who has also received blood transfusions to manage her SCD. “I felt normal for the first time in my entire life.”
Now that her own SCD symptoms have improved, Lena is passionate about collaborating with Versiti to ensure no other sickle cell patient feels as alone as she did. She serves as a certified patient advocate, advocates at the Indiana state house and is co-chair of an advocacy committee. “Anywhere there is a sickle cell initiative, anywhere there is someone who needs to learn something about sickle cell or the impact they could have by simply giving blood, that’s where I come in,” she says. “I just want people to keep it in the right perspective and to consider how great their life could be, instead of focusing on how bad it was. I have lived that many times over, but we all deserve a chance at life.”
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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.