Living With Sickle Cell Disease as a Child: Kennedy Cooper

Ebony.com featured a story this September of a young middle school girl named Kennedy Cooper who has sickle cell disease (SCD). Sickle cell diseases are inherited disorders that affect the red blood cells which become C-shaped and broken down.

SCD is a condition that is inherited which means that it is not contagious. SCD disproportionately affects African American people and it can bring lifelong pain and complication to a person’s life.

If two people have sickle cell trait, they usually do not have symptoms, but there is a 50 percent chance that their child will have sickle cell trait and a 25 percent chance the child will have sickle cell disease. Kennedy Cooper was the first 25% chance.

Having SCD has affected many parts of Kennedy’s life, especially her ability and comfort in hanging out with friends.

For example, she wrote an article on Texas Children’s Hospital blog explaining how she feels self-conscious taking her medicine in front of her friends when she attends sleepovers.

She has tried everything, from waiting until 3am when everyone else has gone to sleep to trying to gather her medicine bag and get to the restroom at a time when all her friends are distracted.

She also turns down pool party invitations most times because the temperature of the pool is usually too cold for her. Because she might be left sitting in the hot tub all alone while all her friends play and splash in the pool.

“Sometime you just can’t help but notice how different you are from everybody else.” Kennedy says.

Kennedy also has other physical problems associated with her SCD. For example, she was diagnosed with avascular necrosis (AVN) in her shoulder after a family trip. She swam in the pool and started to feel serious pain in her arm. Her parents ended up rushing her to the hospital that night. Kennedy says her arm hurt and hurt for many months afterwards while she healed, and it took just as long for her to be able to fully move her arm again.

Once a gymnastics lover, Kennedy had to stop playing all together when her hip started to increasingly cause her pain. Her doctor told her the AVN was in her hip as well which halted her gymnastics and worse, left her on crutches for months and months.

Kennedy eventually had a decompression surgery in fall of 2017 and has been on crutches since. Kennedy is now in seventh grade, still using her crutches, and her doctor keeps telling her she is not ready to walk yet.

Despite all this, Kennedy remains optimistic and positive. She is ready to face her challenges with confidence and perseverance.

She leaves her story with this inspirational quote:

 “So when my hip is ready, I’ll be ready. Until then, I guess I’ll just have to be great at everything else.”

 

Read the original article here. 


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