receptive to the idea. ‘Okay we’ve got your back we know what to do in certain moments.’” Smith shares.
Growing up, Smith didn’t speak about having sickle cell. In fact, until she met her best friend, her brother was the only person she knew with sickle cell disease. While growing up with a brother that has sickle cell was somewhat of a blessing for Smith, in some ways, it wasn’t. Although she found comfort in having someone who could relate to what she was going through, she also knew he was experiencing the same feeling of isolation.
That is why sharing the news of her sickle cell disease diagnosis with her friends for the first time helped her gain confidence and realize that speaking up was okay.
“I remember growing up just feeling a lot of shame and confusion,” Smith notes. “When I was asked ‘are you okay, or what’s going on?’, I would just blow it off like it’s not that big of a deal. . . because I didn’t really have all the vocabulary.’”
“I just felt shame around it- embarrassment because you’re automatically feeling different from other kids so that, in addition to being sick, having multiple doctor visits, [and] being in-and-out of school,” Smith says.
In the U.S., it is estimated that over 100,000 people have sickle cell disease and may require frequent blood transfusions throughout their lifetime.
Smith recalls the moment she had to receive a blood transfusion at the age of 13, even though the actual events leading up to the transfusion are a bit hazy.
“That experience is still a little hazy just because I was in really bad shape. All I know is I was at my local hospital and had to be transported to another hospital an hour away and it was touch and go. They were really considering putting me in ICU and I think one of the doctors suggested a blood transfusion and that was the move that really turned things around for me,” Smith shares.
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Advocating for sickle cell warriors
Today, Smith has learned to manage her sickle cell as she gets older. “Growing up it was a lot of pain crises in my limbs. my arms, my legs. Now it’s my back or hips,” Smith shares.
Fortunately, she’s only down about once a year. This is what prompted her to advocate for sickle cell warriors who may be down more than her.
“I made the decision to be an advocate and do the work on behalf of other warriors who are down more than me. I just felt that