There are about 180 babies born with sickle cell disease in Texas each year, and approximately 40 percent (70 children) are born in Houston.
The Houston Health Department said in a press release that of the estimated 100,000 Americans living with the condition, approximately 7,000 are Texans, and Houston has more diagnoses than in any other region.
Sickle cell disease is a rare genetic blood condition that ultimately causes organ damage, including severe episodes of pain that can last up to a week and can result in multiple hospitalizations throughout a lifetime.
Kennedy Cooper is one of the estimated 1,500 children in Houston living with the disease. In a blog post for Texas Children’s Hospital, Cooper shared her journey, recalling moments where she felt ashamed to take medicine in front of friends and had to miss out on activities she loves because of her condition.
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“It’s not really fun to take medicine in front of friends at sleepovers,” she shared. “I’ve tried countless techniques to avoid this, including sneaking my medicine bag into the bathroom while others were distracted or waiting until everyone was sleeping to take my medicine. I’ve also had to turn down invitations to countless pool parties because the pool temperature was usually never warm enough for me.”
She’s able to shrug if off most of the time, “but sometimes you just can’t help but notice how different you are from everybody else,” she said.
“I’m one of the ones who made it to adulthood and I’m happy, but I’m also respectful of the fact that so many more did not, and that’s part of what pushes me at times,” she said, as reported by KPRC Click2Houston’s Haley Hernandez.
Fasipe said we need more research and treatments for “this devastating disease that affects so many people in our community.”
If you want to learn more about the disease, the sickle cell collaborative and health department will host their 2020 Sickle Cell Advocacy Summit on October 8.