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The Heart of a Lion: Living, Learning, and Thriving with Sickle Cell Disease

Posted February 23, 2024 in Articles

The Heart of a Lion: Living, Learning, and Thriving with Sickle Cell Disease

Most people who meet Jordyn ’27 would never know she is living with sickle cell disease. Her symptoms are not easily visible. However, the debilitating pain and other complications caused by this inherited blood disorder are very real.

“I can have pain in my arms, legs, chest, back … really any part of my body can have pain,” said Jordyn, who was diagnosed with sickle cell disease when she was about a month old.

Now 14 and a ninth grader at Lawrence School, Jordyn’s pain can range from mild to severe, and last for a few hours, a few days, or sometimes even longer. It can also come out of nowhere.

“There have been times when we’ve been at a basketball game, enjoying friends, and then the next day Jordyn is in a wheelchair because she can’t walk,” Kamilah Cunningham, Jordyn’s mom, said.

Sickle cell disease begins with hemoglobin, the oxygen-carrying component of red blood cells. People with sickle cell disease have a type of hemoglobin that, when oxygen is released, clumps together on one side of the red blood cell, causing it to sickle or become banana-shaped. These curved cells can obstruct blood flow, which can lead to pain and infections.

Sickle cell disease affects nearly 100,000 Americans, but because it’s an invisible illness, it’s often misunderstood.

“It’s hard for people to understand,” Kamilah added. “People don’t always believe Jordyn’s in that much pain because she looks healthy on the outside. But that’s how sickle cell goes.”

Frequent pain, hospitalizations, and absences from school are all part of it, not to mention the doctor’s appointments—lots of them.

“We have appointments all the time,” Kamilah said. “We’re probably in the car two to three hours a day depending on where we have to go. But it’s worth the sacrifice to help Jordyn have a sense of normalcy.”

What they have discovered over these 14 years is that there are a lot of preventative measures to reduce the pain and the number of hospital stays. That includes trying many different techniques and medications, which wasn’t always the case.

“Early on, there weren’t many options available other than pain management, just general over-the-counter pain medication,” Kamilah said. “As Jordyn got older, the pain increased.”

The Heart of a Lion: Living, Learning, and Thriving with Sickle Cell Disease

In 2019, the family turned to holistic care in hopes of improving Jordyn’s overall health and quality of life.

Her mom brought her to University Hospitals Connor Whole Health, which offers a variety of services and therapies integrated with other medical treatments to attain optimal health—body, mind, and spirit.

It’s there they met with Dr. David Miller, Medical Director of Pediatric Integrative Medicine with UH Connor Whole Health and Rainbow Babies and Children’s Hospital.

“We were looking for someone who was going to give Jordyn some ongoing relief,” Kamilah said. “We had to go through several doctors to get to Dr. Miller, but I’m glad we found him.”

As is Jordyn, who, through Dr. Miller’s treatments, can experience states of deep relaxation coupled with a renewed sense of hope.

“When my mom tells me we have an appointment with Dr. Miller, I get excited because the treatments really do help me,” she said.

In addition to the traditional medical care she receives regularly, Jordyn comes to UH Connor Whole Health biweekly, where she gets a combination of acupuncture, cupping, reiki, and gua sha.

While sickle cell disease sometimes makes it difficult for Jordyn to manage day-to-day tasks, she has decided to turn a negative situation into a positive one.

I always tell myself, ‘I’d rather be happy than upset, because being upset and also having that pain makes everything worse.' I choose to just be happy all the time.

And that’s what Kamilah admires most about her daughter.

“I tell her all the time she’s the bravest kid I know because she gets pricked constantly, people are constantly chatting around her and making suggestions of treatments, and she’s done an amazing job handling all of that,” she said. “Just being able to stay upbeat and love herself through it all, I can’t say enough about it.”

The straight A’s don’t hurt either. Even when she’s not feeling well, Jordyn makes sure her schoolwork gets done.

“It’s a priority for myself,” she said. “It’s important that I look out for my future, advocate for myself, and be independent.”

The Heart of a Lion: Living, Learning, and Thriving with Sickle Cell Disease

Her work ethic has not gone unnoticed.

“Jordyn is one of those unique students that always brings positivity, amazing work ethic, and a smile to every class, no matter how she's feeling that day,” said Colleen Hotz, Jordyn’s English teacher. “Even during her absences, she reaches out to me via email before being absent to check in and see what she will be missing, along with asking what all she can do to make up any missing work.

“There is never a doubt as to whether she will get her work done, as she will have it completed beautifully within a day with no prompting on my part. Once she's back in the classroom, she's participating in our discussions as if she was never missing from any prior classes.”

Jordyn’s physical science teacher, Nathan Thompson, echoed Hotz.

“Jordyn is a great student,” he said. “She is always beyond engaged in the content, asking and answering questions. Jordyn demonstrates great self-advocacy skills, being sure to communicate with her teachers when she is going to be out or when she needs clarification on an assignment.”

When Jordyn’s not excelling in the classroom, she loves being on the court, playing basketball and volleyball for the Lions. She grew up playing and comes from a sports family. Both her dad and brother played football, while her mom played basketball at Michigan State University.

“Jordyn is a tough kid, mentally and physically, even with her limitations,” said Lawrence Director of Athletics Bryan Cioffoletti. “She is always asking me to be tougher on her and push her if she is slacking in any way. Jordyn is one of those kids that, when you ask her to do something, she will do it or at least try it, even if she has never done it before.”

Nothing new for Jordyn, who's been carrying that same can-do attitude throughout her entire life—and she continues to thrive because of it.

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