September is Nationwide Sickle Cell Consciousness Month, and there’s no higher time to share the story of Kennedy Cooper, a precocious lady with sickle cell illness. In her deeply private weblog for Texas Kids’s Hospital, Cooper tells her story of ache and perseverance whereas educating the plenty on the illness that impacts so many.
“To place it merely, SCD is a bunch of inherited issues the place the purple blood cells are sickle-shaped and damaged down,” she says. “SCD can’t be developed, and it’s not contagious. These cells are rigid and may simply trigger clotting. This could convey ache and problems, like loss of oxygen. To notice, sickle cell trait (SCT) is a much less aggressive situation by which a toddler inherits the sickle cell gene mutation from a guardian. These with SCT normally don’t expertise SCD signs all through their lifetime. If two dad and mom with SCT have a toddler, there’s a 50 % probability their baby can have SCT, 25 % probability for SCD and 25 % probability of normalcy. I used to be the primary 25 % probability, and I bought SCD.”
Cooper went on to explain how the illness has affected a number of points of her life, together with her social life.
“It’s not likely enjoyable to take medication in entrance of pals at sleepovers. I’ve tried numerous strategies to keep away from this, together with sneaking my medication bag into the toilet whereas others have been distracted or ready till everybody was sleeping (normally round three a.m.) to take my medication. I’ve additionally needed to flip down invites to numerous pool events as a result of the pool temperature was normally by no means heat sufficient for me. Once I did go, I used to be virtually all the time within the sizzling tub whereas everybody else performed within the pool. When my household moved right into a home with a pool of our personal, my pals usually complained concerning the water temperature and usually didn’t final greater than 5 minutes within the sizzling tub. I’m in a position to shrug this off most of the time, however generally you simply can’t assist however discover how totally different you might be from everyone else.”
There’s additionally the large bodily struggling related to the illness, with Cooper sharing the story of how a fast dip within the pool resulted in extreme arm ache for months.
“We later realized I had one thing known as avascular necrosis (AVN) in my shoulder, which meant bone tissue dying from loss of blood.”
Months later, her orthopedic doctor identified her with AVN in her hip as effectively.
“Dr. Scott Rosenfeld, my new physician, steered some totally different therapy choices, however we ended up doing a core decompression surgical procedure. I bought my crutches every week earlier than the surgical procedure, and I’ve had them ever since. I might be on crutches till my hip considerably regained bone, which I initially thought may take three or 4 months. Little did I do know it could take a lot, for much longer.
“Now I’m again to high school, in seventh grade—nonetheless on crutches. Folks requested me why I used to be nonetheless on crutches, and once more, I didn’t actually have reply. I am going to the physician time and time once more, and I preserve listening to I’m not able to stroll. Not but, possibly in a couple of months. I’m nonetheless not able to stroll. Properly, I’m prepared, however my hip isn’t.”
Regardless, the junior excessive pupil stays in excessive spirits and continues to face her challenges with confidence and power.
“As a sensible particular person as soon as stated: ‘Everybody needs happiness, no one needs ache, however you’ll be able to’t have a rainbow with no little rain.’ So when my hip is prepared, I’ll be prepared. Till then, I assume I’ll simply should be nice at every part else.”
In case you’re desirous about supporting your native SCD neighborhood, think about shopping for a T-shirt from Supporting Our Sicklers (S.O.S.) Mother or father & Guardian Group. Funds raised will go towards instructional packages and help initiatives for households within the Larger Houston space. To buy, click on right here.