BUFFALO, N.Y. — As a child growing up with Sickle Cell Disease, Juanita McClain sometimes struggled to tell her story.
"When I was growing up is did not tell people I had Sickle Cell. They probably only found out maybe if were like really close because I felt like I was really ashamed of having this disease and having to go through this," she told 2 On Your Side's Karys Belger
Sickle Cell is a hereditary condition that causes the red blood cells to take on a crescent or sickle shape. This makes the red blood cells rigid and makes it easier for them to clot which leads to serious problems for people like Juanita who have the condition. She detailed some of the struggles she dealt with during her interview with 2 On Your Side.
"The acute chest syndrome and pneumonia and um the bone fractures that we suffered with. Also losing my gall bladder. I still have my spleen even though it doesn’t work."
As she got older she realized not many people understood her condition and she decided to fix that, by writing about it. Her first book, "Living and Surviving with Sickle Cell Disease", is part autobiography and part manual educational manual. But it was only after her first book was published, she realized she could use her passion to help a younger audience as well.
"I realized, well there’s a lot of children suffering with Sickle Cell Disease and that’s being born with it and that’s being born with it or like people I know that have small children that have the disease and thinking how can I teach them something about it as well."
She published her second book, "The Monster Within Me." And another followed soon after. Each one speaks to the challenges Juanita and people like her face while trying to live with an illness that is so challenging, in part because it’s so misunderstood. She says people around her appreciate her effort.
"It’s been too long. It’s been a long time coming and it’s been a lot that’s needed."
As she continues to write her next chapter, Juanita hopes her work will empower and educate others to tell their stories as well.
More information about Juanita's books can be found here.