Meet Cloret Carl, a longtime patient of BMC's Center of Excellence in Sickle Cell Disease. Growing up, Cloret and several of her 11 siblings managed sickle cell disease (SCD) with little support. Their mother passed away when Cloret was a preteen, so she and her brothers moved North to live with an older sister. "We didn't really know what was wrong with us. We just sort of dealt with the symptoms."
From full-body pain crises to pneumonia and congestive heart failure, Cloret's health issues had her in and out of the hospital — until adulthood, when she started to do research. "With so many siblings, I was always very curious," she explains. "That was why I ended up investigating sickle cell disease and wasn't afraid to try new things."
In the early '90's, Cloret came across a paper describing a clinical trial at BMC. "My daughter called to make sure I was eligible," she remembers. "I said 'yes' because I was on my way out and figured I had nothing to lose. Things could only get better, and maybe someone else could even benefit."
Over the next seven years, Cloret was enrolled in some version of the trial with good results. She has stuck with BMC ever since.
"People come to BMC from all of the world — Brazil, Venezuela, Haiti, the United Arab Emirates — to seek care for sickle cell disease," she says. "Beyond the medical treatment and the clinical trials, they tailor a plan to assist you in having a life apart from dealing with illness."
Today, Cloret says her SCD is well-controlled with hydroxyurea and she hasn't been hospitalized in seven years. Though she still lives with painful crises, she enjoys working part-time, taking regular walks, and singing classical music. She is looking forward to performing Handel's Messiah this Christmas with her choir.
Cloret's advice for anyone managing SCD: "It's hard living with a disease that is not well understood, but there has been so much progress. Become knowledgeable about the different medications and investigate new treatments. Go out and seek information and become your best advocate."