Family impacted by sickle cell disease working to help other families impacted

BALTIMORE — September is National Sickle Cell Awareness Month.

It's a time used to raise awareness about the disease.

WMAR-2 News spoke to a family in Baltimore directly impacted by the disease.

They are on a mission to help other families like themselves.

Nikia Vaughan is the executive director for the Maryland Sickle Cell Disease Association.

This issue hits close to home because both her husband and daughter have sickle cell disease.

Nikia's daughter, Cimone Vaughan, is a 7th grader. Everyday she has to take hydroxyurea, which is medicine to help her manage sickle cell disease.

"When I was younger, I had to take the liquid, so the liquid was nasty, so they switched to pills at the age of 11," said Cimone.

But Cimone is not alone, her dad Charmon Vaughan has sickle disease as well. He says growing up it was tough.

"I wasn't allowed to the things that my other friends were doing just because my mother was very overprotective," said Charmon.

Now, as an adult, he has to get an exchange transfusion every four to six weeks.

"The exchange transfusion is typically like an oil change you get on your car. Basically, they take blood out and give you red blood cells."

Nikia is the caregiver for both her husband and daughter.

"It can be challenging knowing that when you transition, for Cimone, you know the pain is going to get older the pain might be different," said Nikia.

Nikia is also an advocate. In her role as the executive director for the Maryland Sickle cell Disease Association she works to provide both education and support to families impacted by sickle cell.

"Being well-versed and understanding the sickle cell disease really helps me understand the outcomes will be greater when we get more therapies and more funding and more people to understand what sickle cell is," said Nikia.

Charmon has a message for anyone who is diagnosed with sickle cell disease.

"You can get through it, you can continue to live with this with a healthy lifestyle as long as you continue to take care of yourself," said Charmon

Nikia stressed that donating blood is crucial. She says it's important to have the same types of blood in the bank to combat shortages.