Diagnosed as a newborn, Elani grew up navigating the unpredictable challenges of sickle cell disease.
“Growing up with sickle cell is a lot different … I was in and out of the hospital, pretty much every three months, just due to pain crises, which can be triggered from anything,” Elani tells BlackDoctor.
She spent her summers and winters indoors, monitoring her health as much as possible to avoid ending up in the emergency room. Fortunately, she had a mother who instilled in her the importance of advocating for herself at a young age, something she has carried into early adulthood.
“As I grew up, my mom was really aware of my illness and how to advocate for myself, which really sort of shaped the way I handled living with my illness,” she explains.
Looking back, she credits her mother’s unwavering support as the driving force behind her resilience and professional drive.
“She’s always been the first to advocate for me, from times when I wasn’t able to do so for myself. She made sure that people were aware of my illness, but also that I’m capable of doing so much. And she not only said that to others, but to me as well. She never really said, ‘Oh, we can’t do this’ or ‘We can’t do that’—whatever it is that you wish to pursue, it’s just that things are a little bit different for you. And it’s because of her that I have the mindset that I do now, and am so determined. I just have such a passion in my career that I refuse to let my illness get in the way of that. I wouldn’t be where I am if it wasn’t for her,” she adds.
After becoming a patient at St. Jude Children’s Research Hospital at age 10, she received specialized care that helped reduce her symptoms and gave her a deeper understanding of how to manage her condition.
“When I moved to the Memphis area, I became a patient at St. Jude, and because of the research done at St. Jude, it really opened up a lot of doors in terms of my treatment … that my previous hospital didn’t have … I had a completely individualized care plan,” Elani shares.
As soon as she got there, they were adjusting her medications and monitoring her labs, just making sure she was as healthy as possible.
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“St. Jude really wanted me to have a life outside of my illness. My care team at St. Jude became my family. They asked, ‘What’s going on at school? Oh, you’re in theater? When’s your next show? Oh, you’re in choir? When’s your next performance?,’” she says.
Today, Elani is passionate about baking, a creative outlet that started during the COVID-19 pandemic and has since grown into a clear sense of purpose.
“I love baking so much because there’s so much creativity involved with it. Yes, it’s very technical – making sure ingredients are scaled appropriately, following proper technique. But when you really handle those factors, you can really do anything, and I realized that pretty early on,” Elani notes.
Now a college student majoring in food and beverage entrepreneurship, Elani has worked as a pastry cook and in a bake shop, while consistently earning dean’s list honors. She hopes to study in France and ultimately open her own bakery.
“I go to a pastry school, so I take typical business courses. It’s a fun balance … I get to see the business world and what it takes to start a business. And I’ve had the opportunity to work with so many amazing small business owners over the years and see how each establishment runs things a little bit differently, and it’s so fun and so exciting,” she adds.
Elani has also had opportunities to work on exclusive catered events and in high-end professional kitchens, meeting chefs and learning how to improve her technique.
“It can be really hectic and chaotic. Kitchens are a crazy environment, especially for someone with my illness. Kitchens get really hot, especially if you’re right on the line. So, I had to really learn how to balance, like, ‘Okay, how long can I work and really give it my all before I start crashing a little bit?’ And in those moments is when I take a step back and realize I need to take care of myself in order to do what I love so much,” Elani shares.
Growing up, Elani never kept her illness a secret.
“I always wanted my friends to know to look out like, ‘Oh, if we’re out at the park, she might need to go inside to a cool area and really rest.’ Same thing in the kitchen. If it’s my home kitchen or somewhere I’m really connecting with my team, I let them know, ‘Hey, I have this illness. I might need to step out, or I might slow down at some points.’ It’s not that I don’t care, it’s not being lazy; it’s truly just that I need to make sure that I take care of myself first so that I can give it my all,” she says.
By sharing her illness, she has also raised awareness.
“As soon as you let people know, they start asking questions, they start learning more about sickle cell. And then that’s where awareness really begins, and I always make sure to let people know that, ‘Yes, I have this condition, but it’s never really limited me,’” she explains.
In honor of World Sickle Cell Awareness Day, Elani hopes more people understand the unpredictability that sickle cell warriors face on a day-to-day basis.
“I can sit here seeming completely fine, and the next day I could end up in the ER at any moment. It is just as unpredictable for me as it is for others who may hear, ‘Oh, she’s got sickle cell.’ So, I think the biggest thing to understand about my illness—and many other chronic conditions—is that it’s not a matter of someone failing to take care of themselves. It’s really just that I have to take things one day at a time, finding ways to manage my lifestyle that allow me to flourish,” she shares.
Her advice to fellow sickle cell warriors is to adopt a new mindset.
“I think the biggest thing is realizing that I live a life that’s a little different than your typical kid, but no matter what, that doesn’t really differ from the average healthy person. Once you change that mindset, you realize that everyone’s dealing with something, and for me, that just happens to be sickle cell. So, I think the biggest thing is to not focus on what you’re missing out on or what you can’t do, but focus on what you can do. Focus on your abilities right here in that moment and see how far you can go with them,” Elani adds.
Thinking about the determination her mother instilled in her, Elani has plans to study abroad in France and one day open her own bakery.
“I really do wish to own my own bakery, like just so I could have the full freedom of creating my own menu, have my full vision in a physical storefront—that sounds amazing to me. And I know it’ll be a journey to get there, but it’s something that I really know I’m capable of doing,” she shares.
As of now, she’s focused on learning, growing, and improving her pastry skills.
“I’ve had days where I thought to myself, ‘I’m just not capable of doing this,’ but in those moments, you just have to realize that maybe today’s not the day to do it, but the days will come where you will achieve those goals and those dreams of yours will become reality,” she concludes.
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