Finding the right sickle cell disease care team

Chandra Wallace does not remember a time when she was not “sick.”

Her childhood was burdened with repeated hospital visits while cold, tired and in pain. At age 10, she had her gallbladder removed because of gallstones. When Wallace was 16, she developed painful ulcers on her leg. She got COVID twice in 2021 and was hospitalized for weeks.

Wallace, now 33, has sickle cell disease, which is the most common genetic disorder in the United States, and is widely prevalent in the African American community. It remains incurable.

“For a sickle cell patient, there is never a state of normalcy,” she said. “You have to learn how to cope with your body. You have to learn your triggers and what you can or cannot do.”

This is why finding her care team at UCLA Health’s sickle cell center, which opened last year, has been a blessing. Her painful crisis after the pandemic would have continued had she not found a team that knew exactly how to manage it, Wallace said.

The center, which currently has two hematologists, half-a-dozen primary care doctors, one nurse practitioner and a social worker, has been an invaluable resource for patients like Wallace who have otherwise struggled to find comprehensive care for this chronic condition.