By Ashley Peterson-DeLuca
Trish Robinson is one of the 100,000 Americans who have sickle cell disease. 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.
“It would start small, like a twinge in my back. Then, the pain would take over my whole body. I can hardly breathe,” shares Robinson. “I needed to be hospitalized and receive a blood transfusion.”
She has had over 25 blood transfusions in adulthood alone. These are life-saving procedures where she receives donated blood through an IV. The donated blood helps deliver oxygen to the body and unblock blood vessels, letting Robinson get back to her life. She is a busy mom of four, with two of her children also having sickle cell disease. Robinson is a photographer and works at a community-based non-profit that provides services to individuals with intellectual disabilities.
She’s also a passionate advocate for people with sickle cell disease. When Black Women 4 Healthy Living, a Des Moines-based nonprofit focused on Black women’s health, reached out for her help to get the word out about encouraging blood donations, Robinson jumped right in.
She says: “Blood donations save lives. It saved my life. It saved my children’s lives.”
Unfortunately, frequent transfusions can make finding compatible blood types more difficult when patients develop an immune response against blood from donors that is not closely matched to the blood of the recipient. Many individuals who are Black have unique structures on their red blood cells that make their donations the most compatible blood to help patients with sickle cell disease.
“It takes just a little bit of time to save a life. I’m very thankful for the people who donate,” says Robinson.
Living with Sickle Cell
Robinson laments at the lack of education for people who have sickle cell disease.
“When my kids go to the hospital, we see they have summer camps for kids with cancer or other diseases," she says. "I wish we had something similar for sickle cell. There’s nothing that teaches it early on.”
This was one challenge for her growing up: “Neither one of my parents had the disease," Robinson says. "It was a struggle. They didn’t know the pain. They didn’t know what to do to cope with the disease.”
She says that learning how to manage the disease has been important to her wellbeing.
“I was diagnosed when I was three. It was really bad when I was younger. I had sudden pain crises that needed hospitalization so often that I knew all the nurses on every shift,” she remembers. “Now, I’ve learned the things I can do to prevent getting as sick.”
Robinson also uses her expertise to help her children cope and manage the disease.
She says: “It was a little hard knowing my children were going to go through the same things.
Because I did have it, I had a better understanding. I knew what to do to help them.”
To help people with sickle cell, like Robinson and her children, live long and healthy lives, blood donations are needed.
“I’m personally very passionate about blood drives. I wouldn’t be here without it,” she adds.
To learn more about the American Red Cross Sickle Cell Initiative and make an appointment to give blood near year, visit redcrossblood.org/sicklecell.