“I’ve surpassed the stages of why do I have sickle cell,” Emmanuel Smith said of the genetic blood disorder that occurs in one in 365 Black or African American births. 

Diagnosed at age two, Smith has endured numerous pain crises and hospitalizations over the course of the last 30 years. He doesn’t remember the early years but as he got older and realized the challenges of living with sickle cell, Smith used his platform to help raise awareness about the disease, including recording 20 videos on his YouTube channel highlighting different stages of himself experiencing a pain crisis. Smith also advocates for people with sickle cell through the Michigan Chapter of the Sickle Cell Disease Association of America.  

“I’ve been sprinkling a little bit of sickle cell in everything I do,” he said, “whether it’s in college, whether it’s talking to brothers and sisters, whether it’s strangers coming up to me. I’m just able to speak on it because of the hard times dealing with sickle cell.” 

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. 

Unfortunately, Smith is not able to receive a blood transfusion. When he was younger, he received blood that was incompatible with his. Over time, his body eventually rejected the transfusions and left him with few treatment options when he was hospitalized with a pain crisis. “It is in clear red print in my medical records, do not do this,” he said of the blood transfusions, adding that the transfusions not only exacerbated a pain crisis, but they also nearly took his life. 

Still, he encourages more donors from the Black community to step forward and help those with sickle cell. He tries to convince naysayers that it’s the right thing to do. 

“There’s somebody that you might know who will need (donated blood),” said Smith, a resident of Flint and the oldest of three siblings. “But the chance of them not getting it is more damaging than you may realize.” 

Like other sickle cell warriors, or fellow sicklers as he fondly calls them, Smith has maintained his quality of life with some lifestyle changes. He’s on the pescatarian diet that favors fish and seafood, leafy greens like arugula and spinach, and fruits. He also is better at managing his emotions and stress – factors that can trigger a pain crisis. 

“When you actually focus on it, it makes a difference,” Smith said.

By David Olejarz, regional communications director