Sick Cells interviewed Ayanna, an SCD warrior and Director of Youth Programming for the Sickle Cell Association of Texas Marc Thomas Foundation, on her experience growing up with sickle cell, self-care practices, and how she got involved with her community based organization (CBO).
“Growing up, I had to learn how to advocate for myself. So when I did move to college, I know it was very stressful for my parents to be like, “No, baby, stay at home, live here and then go to school.” But I actually moved two and a half hours away and I didn’t have a hematologist. I did know a couple of people from high school that were going to the same university, but I was pretty much on my own and had to navigate what that looked like. I think helping to find your support people, like my [college] roommate, I had a conversation with her, so she was able to see, “Okay, you need rest, here’s your heating pad,” things like that.
Finding a hematologist was really good. I was at a health fair, I think it was my freshman or sophomore year, and that’s when I ran into my CBO-and they helped me find all of those important factors that we need help with in terms of transition and all of those things. Now they can’t get rid of me because I’m just an advocate to make sure everybody’s taken care of. But it was very important to find that village of people to help support, because not everybody has support, which is very unfortunate because it makes it harder. We already have a disease that’s so hard, and trying to advocate for ourselves in the middle of a crisis, going through the barriers or the stigmatizations of all of the battles that we’re fighting. So it’s nice to have that village and educate as you go forth.”
“I got involved when I met a staff member at a health fair and she was tabling for the organization, I asked a lot of questions, because she was actually the first person I’d ever met with sickle cell. So I was just obsessed, like, “Oh my gosh, I’m not by myself.” And so then, she told me about the organization, the services they offer, and then I asked, “Okay, I just moved here, I need a hematologist.” And so, from there, she told me about the services and a support group. So I came to the support group a couple of times, but with college, it was always up and down, and I was like, “Okay, I have this test and I have this test.” So I was always in and out during college. But then, after I graduated, I just dove right in.
And so then, becoming the Director of Youth Programming, having those camps, as I said, the first time I met somebody with sickle cell, I was 19, 18, so that’s why I love camp, because we do transition camp in March. Then we have an adult retreat, because that’s important for empowerment and advocacy. And then, our youth camp, 6 to 14 year olds, education, advocacy, teaching them about their bodies and how they can make sure that they know what’s happening, and the important part is you’re not alone. And so, when I see the kids come to camp, and they look to the left and look to the right and everybody around them has sickle cell, even the medical staff, we have a full medical staff, some of the nurses and doctors have sickle cell, and so they’re like, “Oh, I can do it. I can be X, Y and Z.” And I do make sure that we bring positivity to warriors and they share their testimonies to let them know, “Sometimes you have to navigate the system a little differently, but we can do it.” It’s very important.”
