Sickle Cell: The Last Health-Care Frontier for Black Lives 

While the genetic disease received widespread attention during the Civil Rights Movement, researchers and doctors say patients continue to suffer from a lack of adequate treatment.

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Still, sickle cell research and care is close to her heart. "I feel like sickle cell is just as much an emotional crisis as it is a physical one," Abdul-Sabur said. "Sometimes you feel very isolated. Who do you really turn to that you can talk to that will understand? That was one of my drives to go to medical school, because I understand the patient's plight. I'm a patient myself." Although she didn't become a doctor, Abdul-Sabur said she tries to incorporate her passion for advocating and working with those affected by sickle cell into her teaching.  

Abdul-Sabur credits all of her doctors, and especially the ones at Children's Hospital, for supporting her. She said they would give her their personal cell phone numbers even when she was no longer a patient, so that if she ended up in an emergency room, they could communicate with the on-call hematologist to ensure she received the care she needed. "I would be en route to the emergency room while on the phone with the doctors," she said. "By the time I got there, the nurses at the check-in station would be aware of my emergency."

All of the patients interviewed for this story said that the specialized care they received at Children's Hospital helped them significantly over the years, and that they could not have imagined their lives without the doctors and nurses who were their advocates. Many of these health-care providers and patients volunteer at the hospital's sickle cell summer camps and support groups. Wendy Bloom, for example, started a knitting circle for patients in hopes of providing them with other tools to cope with pain, and to build friendships outside of the hospital setting. There are groups for children and teens, and parents of children with sickle cell. This is what a truly comprehensive center looks like — not just primary care, but also care that encompasses the whole person and their families.

Richard, who has outlived most of her friends who had the disease, chose not to have children. "My ideology is like, if my body can barely make enough blood for me, how can it make blood for another person?" she said. "With having a purpose being here and living with sickle cell for so long, it's like, I speak up, and not in a sassy way, but it's like, I've been given gifts to do things that are gonna help me stay as much together as possible, you know what I mean, when it comes to sickle cell."

As for Vichinsky, he is more hopeful now that CHORI is not closing. He continues to do research about sickle cell and is trying to recruit top researchers to come to Oakland in hopes of improving the lives of patients. "I'm really excited that they're not closing it," Vichinsky said. "I'm looking forward to UCSF helping in expanding CHORI scientist recruitment."

And Rhymes? She also chose not to have children for fear of passing on sickle cell. "And, I don't want to be a burden on my kids," she added. But she's been a mother figure since she was in her late-teens, helping to take care of her foster siblings. And she's helping to raise her younger sister's two kids — "I see them as my kids, too."

This reporting was supported by a grant from the USC Annenberg Center for Health Journalism's Impact Fund.

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