Minnesotans raise awareness of sickle cell anemia

MINNEAPOLIS -- Sickle cell anemia is a painful condition that can make you feel like you are on fire. It's a life-long disease that is diagnosed in 1 in 365 African American babies.

Isaac Kawonise is a sickle cell anemia patient who says it's been a theme in his life since he was a kid.

"Every time I have a pain crisis it takes me back, cause it's the same," he said.

Now a young man, his life has been touched - but not defined from the genetic condition.  

"It feel like someone is squeezing your bones constantly.  It can be unbearable, especially when you fall into a crisis," he said, describing what it feels like when his pain flairs up.

"It's recurrent, almost like getting hit with a hammer in your hips and your back over and over and over again and nothing seems to work," said Kawonise's doctor Dr. Alexander Boucher. 

The disease effects people in the US from African descent. It comes from a regional natural defense against malaria.

"The red blood cells typically look like a donut without the hole punched out will turn into a hook or sickly shape when there's not enough oxygen in the blood," said Boucher, who is a hematologist at M Health Fairview.

He's working to elevate care, because data shows Black people in the U.S. have less access to proper healthcare.

"We need to provide patients with a sense of trust that we are listening to them," he said.

And even though the pain is powerful - resilience is too.

"People who deal with the disease are stronger than they look," Kawonise said.

September is Sickle Cell Awareness month but the Sickle Cell Foundation of Minnesota works year-round to help people.