Shelby Co. sees highest rate of sickle cell disease amongst babies in the nation

MEMPHIS, TENN. — One out of every 287 babies in Shelby County is born with sickle cell disease.

That’s higher than the national rate of one of every 350 babies.

A new CDC report says fewer than half of children diagnosed with sickle cell anemia get the life-saving screenings and treatments recommended.

The report said many people with sickle cell anemia don’t have access to providers with expertise in treating the disease. Many also report feeling stigmatized and having their symptoms dismissed when they do receive care.

“The biggest ordeal I think most of us with sickle cell anemia deal have is people not believing our pain is real,” April McGrory of Memphis said.

McGrory was diagnosed with sickle cell anemia at seven months old. The disease eventually led to a blood infection that cost her both her legs.

But getting treatment for her pain hasn’t always been easy.

“I’ve just had so many bad experiences with ER doctors and being in the hospital to the point where if my pain is not where I just cannot take it and I am crying, that is the only way I will go to the hospital,” McGrory said.

She’s not alone. In 2019, the CDC fewer than half of children ages 2 to 16 with sickle cell anemia received the recommended screening for stroke, a common complication.

“Before we had this test and we were doing it, one out of 10 kids had a stroke. So just imagine if we had 900 kids. We would have 90 with a stroke. That’s a lot,” Dr. Jane Hankins with St. Jude Children’s Research Hospital said.

Additionally, the report says many children are not receiving the recommended medication, hydroxyurea, which can reduce complications, like pain and acute chest syndrome.

Pain, pneumonia, organ damage, a whole lot of things this disease does to the body, this medication can prevent,” Dr. Hankins said.

Dr. Hankins said St. Jude has one of the largest pediatric sickle cell programs in the country.

She said the hospital is working to help patients get proper care. But still, more must be done.

“We need more treatments, we need new resources, we are constantly needing more support to keep doing what we do,” he said.

Dr. Hankins said sickle cell can shorten life expectancy by more than 20 years and can lead to complications affecting all parts of the body.

Right now, St. Jude is taking care of about 900 children with the disease.