Sickle Cell Awareness Month with Chey

For Sickle Cell Awareness month, Speak Now for Kids spoke with Shannon, Chey’s mom, to learn about the signs and symptoms of Sickle Cell Disease (SCD). Chey faced SCD head on at Children’s National Health System and endured her condition with a positive attitude. She refused to let it stop her from getting good grades and participating in church and sports.

SCD is an inherited blood disorder that affects red blood cells, resulting in anemia and severe pain. Even though this disease isn’t widely talked-about, approximately 70,000 to 100,000 Americans have SCD. We’re honored to have Shannon share her daughter’s health journey with us and eager to learn more about the signs and symptoms of SCD.

Speak Now for Kids (SNFK): What impact does Chey’s medical condition have on your family? 

Shannon: My husband and I were 19 and 20 years old when we had Chey. We had to grow up quickly and learn all about SCD and its symptoms, signs and treatments. Everyone spreads the horror stories about SCD, and you don’t hear the success stories as often. We knew from the start that Chey is strong and will fight the disease. It won’t impede her dreams and what she aspires to do — we’ll just have to find alternate routes. Sports play a big role in our family. Softball and soccer are demanding sports, so Chey know their limits and aren't scared to tell others about them so they can be successful and safe. I am super proud of my girls. They surprise me every day and show me that this disease will not dictate who they are.

SNFK: Why is it important to raise awareness on SCD? 

Shannon: My husband is mixed (black and white) and I’m white, so a lot of doctors and nurses would question Chey’s diagnosis because of their complexion. SCD does not discriminate but many people believe that it only affects African Americans. Spreading awareness and knowledge is the best and most effective way we can fix this. 

We’ve been hosting a blood drive for the past four years to promote SCD awareness in Charles County. The event has grown every year and taught a lot to people who had heard of the disease but weren't aware of what it actually does to a child. I advocate for kids with SCD so that they are aware of the strength they possess. I want my kids to not only be strong women when they grow up, but also be strong advocates for themselves and those around them who have SCD. 

SNFK: How can other parents join the effort to make children’s health a national priority? 

Shannon: Reach out to other parents, ask questions, do research and be an advocate for your child! Life is so busy and we all get so caught up in what "we have to do" that we push these things aside. Getting the diagnosis is overwhelming and can feel like the walls are closing in. There needs to be a door for parents to find and connect to other parents and doctors.

Learn more about the signs and symptoms of SCD here.

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commented 2018-09-27 16:30:19 -0400 · Flag
Thank you for sharing, this is wonderful information