A Milwaukee author living with sickle cell disease is transforming his lifelong battle with pain into advocacy, while researchers at Versiti work on groundbreaking gene-editing treatments that could revolutionize care for the condition.
Watch: Milwaukee man turns sickle cell pain into purpose through new book
James Griffin, author of "Breaking Silence: Living With Sickle Cell Anemia," has endured excruciating pain from the disease for most of his life. Diagnosed at age 2, Griffin describes the sensation as feeling "like a drill is going through your body or you're being hit with something heavy like a baseball bat."
"The pain is excruciating, and it's not something that's exaggerated," Griffin said.
Sickle cell disease affects over 100,000 Americans, with the majority being Black, according to the CDC. Despite common misconceptions, Griffin emphasizes that the condition can affect anyone.
"It's labeled a black disease, but it's really a blood condition, so anybody can have sickle cell," Griffin said. "As I got older, I took it as never let a situation or circumstance define you."
Griffin's advocacy work has taken him from the White House to Harvard University, where he has shared his journey on the national stage. His new book aims to give a voice to others living with the condition.
"I found a way to turn my pain into purpose and be a voice for others," Griffin said.
Meanwhile, scientists at Versiti are working toward similar goals through cutting-edge research. Dr. Phil Doerfler, a Versiti associate investigator, is leading gene-editing research that offers new hope for patients.
"The most recent therapy option is using a person's own bone marrow, so this is something where you take the bone marrow out of a person's own bones and you do a genetic manipulation so the blood they produce no longer produces sickle hemoglobin, and they don't have sickle cell anymore," Doerfler said.
The groundbreaking therapy is already being implemented in Milwaukee, with at least 3 patients receiving the new treatment. Doerfler believes continued advocacy and awareness remain as crucial as the scientific advances.
"I think it has a very real possibility of helping a lot of people in Wisconsin," Doerfler said.
Griffin now works as a medical assistant at Children's Wisconsin, the same facility where he once received care as a patient. He helps others through empathy and education, embodying his belief that community support is essential.
"It takes a village to raise a child, and I believe it takes a whole community to help someone living with sickle cell," Griffin said.
Griffin's story demonstrates that strength isn't about avoiding pain, but rather what you build through enduring it. His book can be purchased on Amazon.
Dr. Phil Doerfler encourages everyone who can to donate blood and support local research, advocacy and education around sickle cell disease.
This story was reported on-air by a journalist and has been converted to this platform with the assistance of AI. Our editorial team verifies all reporting on all platforms for fairness and accuracy.
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