Living life to the fullest even with Sickle Cell Disease

“You can’t imagine it unless you’re actually dealing with it.”

Sherrell Johnson was diagnosed with Sickle Cell disease at 6 months old, a blood disorder that affects about 100,000 people in the United States- most of which are of African descent. But before the diagnosis, her mother faced months of a screaming, crying baby that doctors dismissed as being just that- a fussy baby.

After more medical visits, it was determined that she had Sickle Cell, a disease that causes red blood cells to harden and form a C-shape (like a sickle). When hardened, the cells can get caught in blood vessels and cause serious complications for patients. These complications can include severe pain called a “pain crisis,” respiratory conditions, organ failure and even stroke.

Even with the diagnosis, Sherrell’s mother didn’t know much about Sickle Cell disease and her daughter faced a childhood full of being in and out of the hospital as the family tried to care for Sherrell as best as they could with the limited information available to them.

Originally from Chicago, Sherrell attended Western Illinois University for college and remembers a particularly cold day when she was in so much pain she couldn’t make it to the dorm dining hall and ended up back in the hospital where she was misdiagnosed with bronchitis. For the rest of her college career, Sherrell found herself being hospitalized about once a semester.

There is no widely used cure for sickle cell disease. However, the Red Cross supports one of the most critical Sickle Cell treatments of all – blood transfusions. It was during college that she started having more frequent blood transfusions to help ease the tremendous pain caused by Sickle Cell.

In her junior year of college, a bone infection forced her to temporarily use a wheelchair and triggered even more pain crises. At this point, Sherrell was getting transfused every single month and continues to get transfusions today. Living with Sickle Cell has made nearly every aspect of her life more challenging and prevented her from doing some things she loves, like traveling.

Through the ups and downs of having Sickle Cell, Sherrell has had to learn how to carry on with her life in spite of the pain she’s feeling. This was especially difficult while working in the retail industry with long hours on her feet and doing very physical work. At the onset of the COVID-19 pandemic, she faced more misunderstanding from her peers and colleagues and had a rough turn with the virus when she caught it herself, being already immunocompromised. Even with Sickle Cell holding her back, she’s proud of what she’s accomplished in her life already and continues to work to raise awareness about the disease through her own brand, Sickle Cell Diva.

“I just want people to know that they may not even know when someone has it,” Sherrell said. “We’re living our lives to the fullest and not letting Sickle Cell control us.”

Today at age 43, she is living in Orland Park and happily working full-time remotely for Discover Financial but still gets sick and finds herself back in the hospital 2 or 3 times a year and still needs blood transfusions every few months. Even with advancements in medications, blood transfusions continue to be a critical treatment for her and others with Sickle Cell. For many patients, a close blood type match is essential and is found in donors of the same race or similar ethnicity so having a diverse blood supply is important so it’s there for patients when they need it. Having blood available helps patients like Sherrell live life to the fullest.

“Don’t count us out,” she said. “I think people count us out too much. We’re more than our diagnosis.”

Written by Illinois Communications Manager Holly Baker

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