Tag Archives: sickle cell warrior

How Blood Donations and Advocacy Helped a Dancer Reclaim His Life from Sickle Cell Disease

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Noah was a professional dancer in his 20’s

Modern, jazz, and contemporary dance — he loved doing them all on stage. He was a professional dancer who had performed in shows in Chicago, St. Louis, Atlanta, and D.C., until the pain became too much.

“Deep chronic pain in my femurs and spine and throughout my body. It wouldn’t go away,” remembers Noah James. He was just 25 years old when the doctors told him, “Your bones are decaying.”

Noah was no stranger to pain, as he had been wrestling with Sickle Cell Disease all his life. But this was different. “It felt like I was walking on glass,” he says.

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Brought Back to Life by Blood Donations

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Latrese Fowler with her son Cameron when he was young

When Latrese Fowler found out her newborn son didn’t inherit sickle cell disease, she was so overjoyed that she had a celebration. “We had a party when we found out he doesn’t have sickle cell. We went to Las Vegas!” she remembers.

Twenty-six years later, Latrese is mom to grownup Cameron, and you can hear the pride in her voice as she describes his job as a utility locator. She is grateful her son was spared a lifetime of pain and hundreds of hospital visits treating sickle cell disease and its complications. It’s an experience she knows about firsthand.

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Why Blood Donors Who are Black Matter: One Woman’s Lifesaving Connection to Donors

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“After being sick I wanted to get out of the house and look normal,” Jenielle says

Growing up, Jenielle Tulloch didn’t understand why illness followed her when no one else around her seemed to suffer the same way. Pain came in waves, sudden and consuming. “A lot of times I felt like a burden to them,” she says about getting sick so often.

“It’s like you’re being stabbed multiple times, over and over, an internal throbbing pain like a heartbeat,” she says. These crises would send her to hospital. As a child she thought: “You aren’t going to make it past 30, you aren’t going to have kids.”

Fortunately, she did make it past the age of 30 and had two children of her own. As an adult she began to educate herself about sickle cell disease. And eventually she even came to appreciate how the experience shaped her.

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Hope in Her Veins: Battling Disease with Courage and the Kindness of Strangers 

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By Alex Keilty 

Nivia is a full-time Howard U. student, content creator, Girl Boss, and sickle cell advocate. On her best days she finds time to get it all done while receiving her treatment!

Propped up on a reclining hospital bed, tubes are sending her blood through a machine running nearby. The staff tending to her treatment are laughing with her as she tries to hold still while also chatting in FaceTime with colleagues about a documentary she is helping create about sickle cell. This is Nivia Charles, full-time university student, public speaker, campaign model and social media content creator, and future real estate developer. This 28-year-old woman has a lot going on…and she is also managing an excruciating condition, sickle cell disease. 

“Things can be challenging and can feel impossible,” says Nivia when reflecting on life with sickle cell. “But it’s something I live with and even thrive with…I can’t be 100 percent positive all the time but I can be optimistic more often than not.” 

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