Her story: Jennelle Stephenson was diagnosed with SCD at birth, and it has been a challenging journey ever since. She has had pain episodes so intense that she temporarily lost mobility in her extremities. Most of her crises occur out of the blue, without warning. “Living with this disease is a scary, unpredictable rollercoaster. Every morning when I wake up, I have to plan my day as if I were going to go into crisis. Whatever I do and wherever I go, I have to make sure that I have a plan and the proper supplies if a crisis were to occur.” Despite the challenges, Stephenson is currently pursuing a master’s degree in health care administration.
Unimaginable hurdle: Stephenson has lived most of her life trying to participate at the same capacity level as her peers. Her biggest challenge was finally accepting that she had to do things at a different pace than everyone else. “I would disregard the fact that I had an illness and continue to assimilate with the crowd, enjoying typical life activities, such as going swimming whenever I wanted, working, running, going to classes, daily household chores, and even traveling with no hesitation. I eventually came to a point where I had to stop and say to myself, ‘This is not for me. I’m killing myself trying to keep up.’ I now follow my body’s lead and take it at my own pace.”
How she survived: In the midst of tough times, Stephenson surrounds herself with laughter and positivity. “It is easy for me to get sucked into my pain and lay in the dark crying. So instead of tears, I laugh between every grimace of agony. I make sure that loved ones around me don’t focus on the negative but find the comedy in the situation. I think of my goals, give myself a little pep talk, then I will my body to make it out of a dark spot.”
Her motivator: Stephenson is currently enrolled in a gene therapy trial at NIH and is expecting to receive her transplant in November. “I have recently become more hopeful and optimistic in life due to the gene therapy clinical trial. Just the idea of being able to potentially live a life that is pain free keeps me smiling and keeps me fighting for another day.”
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