After Mary Lou Swift was born with sickle cell anemia, doctors were pessimistic about her life expectancy. Fast forward six decades later and Swift proudly boasts she is “alive and feeling well.”

This month, she will celebrate her 68th birthday. 

“We’re going to do something,” said Swift, a mother and grandparent to four grandchildren and four great-grandchildren (a fifth is due in August). “To me, birthdays and Mother’s Day are my two favorites that I really want to be recognized because doctors told my mom and me that I wouldn’t live to be 15.”

Pain crises associated with sickle cell had Swift in and out of hospitals at an early age. “I think I spent maybe 70-80% of my time in the hospital during my school years,” she said. These days she is in a much better place managing a disease that occurs in 1 in 365 Black or African American births. 

A self-described homebody, Swift works as a volunteer foster grandparent and enjoys putzing around the house and moderate exercise. She does the grocery shopping for her and her partner of eight years. 

“I couldn’t do anything exertive, nothing, when I was younger,” she said. “Now, I can mow the yard, I love being in the yard. I love my volunteer work. My relationship is a good one. I don’t try to hold myself back. When I start to feel tired, I sit my booty down.”

Sickle cell affects the shape of red blood cells, which carry oxygen to the rest of the body. Instead of round and soft, red blood cells in sickle cell patients are crescent-shaped and hard, which prevents blood from flowing smoothly. This can lead to severe pain, tissue and organ damage, even strokes.

Blood transfusions provide a lifesaving treatment for patients during a sickle cell crisis by increasing the number of normal red blood cells in the body. Some sickle cell patients may need as many as 100 units of blood each year. Stem or bone marrow transplants are considered the only cure for sickle cell disease. But these treatments and gene therapy are not widely available.

Swift received numerous blood transfusions that kept her alive as a child and young adult. In 1991, her hematologist suggested she move to California. Michigan winters exacerbated pain crises for Swift. “I’m afraid for your life,” the doctor told her.

The move proved to be life changing.

“That’s where I learned on how to really take care of myself as a sickle cell warrior,” Swift said.

At the urging of her hematologist in California, Swift enrolled in a study testing a novel therapy at the time called apheresis. During the procedure, a centrifuge machine removes unhealthy red blood cells (the crescent-shaped ones) and replaces them with healthy donated blood cells.

In 2002, Swift returned to Michigan to stay, buoyed by the promise of what apheresis could mean for her quality of life moving forward. Since her return, she receives an apheresis treatment every month.

“I still have my little pains and aches,” she said. “However, it’s never as serious as it used to be that would put me in the hospital.

“Even with the winters, I’ve been doing good. The blood transfusions kept me alive in the early years. Apheresis is keeping me alive now. Not only alive but alive and feeling well.”

Swift, a volunteer for the Michigan Chapter of the Sickle Cell Disease Association of America, is a fierce advocate for sickle cell warriors (those living with the disease) and for helping to raise awareness about blood donations from the Black community. For patients with sickle cell disease, blood donors who are Black are almost three times more likely to be a match for the blood most commonly needed, compared with  donors who are not Black or African American.

“People look at us and say, ‘why should we do donate),’” she said. “But the thing about it is you’re helping to save lives.

“I share my story with everybody. I have sickle cell; sickle don’t have me. That’s my motto.”

By David Olejarz, regional communications director