Her story: During a long hospitalization in 2005, Tosin Ola went on a search for a sickle cell blog—something that could connect her to others like her. A practicing nurse then, she couldn’t find what she needed, so she started her own, and it became so wildly popular that two years later, Ola launched the Sickle Cell Warriors website, a portal of information for sickle cell patients, families, and health professionals. She also started a Facebook page—now with nearly 21,000 members—all while working on a dual degree in nursing and business administration and raising two boys. Her activism around building community has garnered Ola national attention and endless kudos.
Biggest challenge: “It’s the day-to-day living with sickle cell disease. There are so many things you’re always having to manage. But it’s also the emotional challenge of being motivated to hold on to hope in the midst of despair because the pain is so bad or you’ve been sick for months and months. With this disease, you’re never at rest, never at peace.”
What keeps her going: “I have a strong faith and I believe I was given sickle cell for a purpose, and it’s up to me to live out that purpose. Warriors is my purpose. And now that I have the boys, I want to fight. I don’t want them growing up without a mother.”
Why she loves her work: “There’s something about having someone who understands your struggles, who walks in your shoes, who just gets it—you don’t have to explain it. That I was able to grow this kind of community makes me feel good. It’s such a positive space. I call it a labor of love.”
Her hope: “My hope is for a universal cure—a cure that works for everyone. So many who live with sickle cell disease are not eligible for a bone marrow transplant because, like me, they do not have a match. But there are so many researchers, scientists, and doctors who in some way are trying to solve the puzzle. In the last three years, we’ve had so many with SCD die. Things like that pull you down, but I’m quite optimistic that in my lifetime there will be a cure. And that I will be cured. I just have to survive until then.”
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