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Patient Moves Forward in Sickle Cell Care and in Life
| Feb. 25, 2020 | Maturing into adulthood often means leaving familiar things behind while embracing new ones, and Jayla Buford did just that in late 2019 as a sickle cell patient.
Buford had been receiving care through the sickle cell program at Arkansas Children’s Hospital since she was 4. In late 2019, now an adult, she transferred to the UAMS Adult Sickle Cell Clinical Program, which has experienced treating adults who have pain crises that come with the disease.
“I like it so far at UAMS. I’m a big complainer,” Buford said with a smile. “If I don’t like something, you’ll know about it, and I haven’t had to complain about anything. I have to think positive as much as I can.”
Sickle Cell patients are treated at ACH until age 21 then they move to an adult health care provider, the UAMS Adult Sickle Cell Clinical Program. UAMS works with ACH to ensure the transition is an organized process. Buford said Leigh Ann Wilson, a UAMS social worker helped make the transition from ACH to UAMS a smooth one. Wilson gave her a tour of UAMS and showed her exactly where to go on campus.
Buford said when she has a sickle-cell-caused pain crisis, her chief pain site is in her head, and the pain then radiates into the rest of her body. At UAMS she began undergoing apheresis every three weeks. During apheresis, blood is removed and replaced with non-sickled blood to prevent blood clots and pain crises and reduce the risk of stroke for sickle cell patients.
Buford also has a rare neurovascular complication of sickle cell called moyamoya in which the carotid arteries to the brain narrow and limit the flow of blood and oxygen to the brain. Moyamoya can cause strokes.
Early in her childhood, she had a stroke while sleeping. Her first waking stroke was in fifth grade, and she had a seizure in eighth grade that may have been caused by a stroke, Buford said. The good news is she has been seizure free for 10 years, a requirement to get a driver’s license.
The moyamoya sometimes comes with almost paralyzing pain, she said. If she forces herself to get up and move early in the pain episode, she can avoid being incapacitated by it, and it helps limit her pain. Buford credits her mother with helping her do that.
She said she’s enjoyed meeting the new people in the Adult Sickle Cell Clinical Program and has adjusted to UAMS. Pain medication she receives through the program help with headaches. The self-care she does — staying hydrated and deep breathing to oxygenate her blood and head off a crisis — also have been beneficial.
Despite the health challenges she faces, Buford has been able to maintain a busy, productive life pursuing a bachelor’s degree in human resources management at the University of Arkansas at Little Rock and a job in retail sales. With help from the program at UAMS, she’s continuing to look ahead to the transitions and accomplishments to come.