Sickle cell treatment brings a combination of anxiety and hope

Sickle cell treatment brings a combination of anxiety and hope

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But she has other concerns, especially for her 7- and 12-year-old daughters. A long hospitalization for gene therapy followed by months of recovery would be difficult for them, she said.

“They’re not babies, but they need me,” Ms. Polanco said.

Patients ask when gene therapy is needed in the course of the disease. If they wait too long, the disease can lead to stroke or permanent organ and bone damage. But if the disease is mild and manageable, is it better to wait? Andre Marcel Harris, 33, who lives in Houston, decided waiting was the best option.

“I’m not as sick as a lot of others,” he said. “Gene therapy is not part of the conversation at this point.”

Shamar Lewis, 20, who lives in Orlando, Florida, has several concerns — possible long-term side effects of gene therapy, costs and the months-long treatment and recovery process.

Yet sickle cells have been such a burden. He spent years of his early adolescence unable to attend school because he was so ill—his school even sent teachers to his home. Now a high school graduate, he’s interested in joining the military, but has since learned that sickle cell won’t get him accepted. With gene therapy, “I was going to really live my life,” he told his mother, Carla Lewis.

But what would that life be like?

Without the disease, said Teonna Woolford, 31, a sickle cell patient and advocate who lives in Owings Mills, MD, patients “don’t know who they are.” Many worry, she said, about “trapping a known problem — sickle cell — for something else and an overall fear of the unknown.”

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