At age 7, Jori Smith had her first sickle cell pain crisis while in first grade. The pain was so bad she spent two weeks in the hospital and had to go through rehab to learn how to walk again.
“It was a shock for me because I mean growing up, up until that point, sickle cell wasn’t necessarily brought up a lot with me,” Smith shares. “My parents knew and of course, were working hand-in-hand with my doctors, but I didn’t have much of an idea of what was going on.”
She was diagnosed with sickle cell disease (the most common genetic blood disorder in the U.S.) when she was just two weeks old, but up until this point, only suffered from infections and colds as a result.
Her younger brother also has sickle cell, which occurs in 1 in 365 Black or African American births, and he began experiencing pain crises around the same time.
Jori’s pain crisis marked the beginning of her family’s educational journey with sickle cell disease.
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Growing up with sickle cell
“It was a lot of education for my parents just so they could provide or help provide the best care for us as well as explain it to us the best way they could,” Smith says. “There were a lot of small conversations, especially when I was sick, talking me through okay you have this blood disorder and sometimes you experience this pain, sometimes you will experience infections and colds and the flu.”
This conversation was followed up by things she could do to protect herself.
“‘Make sure to wash your hands.’ ‘Make sure you bundle up when it’s cold.’ ‘Make sure you hydrate.’ So, it was explaining kind of why I was sick or why I was in pain, but also in the moments when I was well- you have medicines to take, make sure you’re taking your vitamins . . . all the things that I need to do to maintain my health in those moments when I was well,” Smith adds.
Her parents also prepared her and her brother for the day they would have to advocate for themselves when they became adults. Years later this advice would pay off as Smith prepared to head off to college.
Although Smith’s college was only a three-hour drive from home, the transition into adulthood wasn’t an easy one. The good news, however, is that she had her parents’ advice to get her through it. In preparation for the transition, she began sharing her diagnosis with a few friends in her senior year of high school.
“It was great because although they didn’t understand everything, they were