Why focus on wellness: “The unpredictable nature of a sickle cell crisis can be devastating. Unlike with other chronic illnesses … you rarely see it coming. There are no markers. So you have to rebuild yourself after every single crisis. My passion is giving people real tools to deal with that.”
Biggest challenge living with the disease: “When I’m sick, I can’t do anything. It just holds me back. I can’t show up. I leave someone hanging. I lose time. That’s what breaks me down.”
Her motivator: “Someone once said that having this disease is like living in the shadows. And it’s true. But it’s a mindset. And it’s difficult to bring people out of that mindset when they’ve been told that this is the illness that’s going to kill you. But that’s what has to happen. I tell myself, ‘If you don’t push, nothing moves.’ I believe that. I’ve got to keep pushing. I can’t let the disease win.”
Her hope: “I want the assumptions that people make about people with SCD to change. People get jaded by the one person who abuses the system. But, I say, look at all our patients and give them the fair shot they deserve. Don’t cut their legs out from under them. Your best asset may be a sickle cell patient!”
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