“A life of struggling, a life of pain.”
That’s how Pastor Marcia Taylor explains her daughter’s life. Her daughter died of complications from Sickle Cell disease at the age of 37. September 18th would have been her daughter’s birthday.
Pastor Taylor is the CEO of the Sickle Cell Anemia Foundation of Oregon. She and dozens of others gathered at the Red Cross Chapter Office in Portland on September 9th in recognition of Sickle Cell Awareness Month.
Sickle cell disease distorts soft and round red blood cells and turns them hard and crescent-shaped. As a result, blood has difficulty flowing smoothly and carrying oxygen to the rest of the body, which may lead to severe pain, tissue and organ damage, anemia, and even strokes.
Taylor says she learned her baby had the disease when she was just 4 or 5 months old. She went to bed a happy baby but the next day she was burning up with fever. Later that day at the hospital, the doctors told her that her daughter had Sickle Cell Disease.
“No known cure, they said, and that really stuck out to me, ‘no known cure’.”
They tried to give her a normal upbringing, but little things could throw her body out of whack. When she got a cold, she’d get very ill. When she was taken to the hospital during one of the Sickle Cell flareups, they didn’t know if she’d be there a few days, a week, or several weeks. Her daughter’s education was disrupted.
“I can still see her sitting in her hospital bed with all her books around her when she was going to college.”
There are treatments now and patients are living longer lives, but there are still hurdles. Sometimes when patients come into the doctor’s office in pain because of a Sickle Cell flareup, they are accused of being drug addicts angling to get painkillers.
Pastor Taylor says she can’t count how many blood transfusions her daughter needed in her life, but it was in the thousands. That’s why they partner with the American Red Cross.
“It’s blood products that keep Sickle Cell Patients alive,” she says. “We need African Americans to give blood. We do need them. They need to realize that giving blood is safe….and the blood products people receive are safe.”
One in 3 African American blood donors are a match for people with sickle cell disease. To help ensure patients have the blood products they need; the American Red Cross is working with partners to grow the number of blood donors who are Black.
There will be a Sickle Cell Blood Drive in Portland on September 23rd, 2023. Find out how you can help. https://rdcrss.org/3WVPs5z