• Hanifah Jones

Chronicles: Living with Sickle Cell Disease

When people first meet Suhaylah Stones, they are instantly drawn to her outgoing personality and infectious laugh. Like many 22-year-olds, she is obsessed with Starbucks, enjoys outings to Chipotle, and spending time with her loved ones. However, her health is something that sets her apart from her other people her age; Suhaylah is one of the estimated 100,000 Americans living with sickle cell disease.

Sickle cell disease is a genetic blood disorder that results in abnormal red blood cells. Healthy blood cells are round-shaped and flexible, giving them the ability to fluidly travel throughout the body’s organs. With sickle cell disease, the body’s red blood cells are shaped like crescent moons, causing them to stick together and create clots in the veins. These clots often prevent blood and oxygen from reaching the organs, causing excruciating episodes of pain known as a “crisis”.

Believe it or not, there was a time when Suhaylah didn't know that the blood flowing through her veins was different than her counterparts. When her parents first met, they were unaware that they were both carriers for the sickle cell gene. Unfortunately, as a black American couple, the odds were against them.

Suhaylah and her family

Sickle cell disease disproportionately affects populations that originate from Sub-Saharan Africa, including black Americans. According to the CDC, 1 in 13 black Americans are born with the sickle cell trait, while 1 in 365 are born with the condition.

It wasn’t until the diagnosis of her younger brother that her family went to genetic counseling, revealing that Suhaylah and her two younger brothers also have the disorder. “Kudos to my mom because I don’t know if I could do it,” she said, reflecting on the strength of her young mother for raising three children with the condition. “No kid likes needles,” she continued. “But they had to draw our blood for every visit.”

Thankfully, her childhood with sickle cell was more than just doctor’s appointments and blood work. Suhaylah credits St. Christopher's Hospital and the Children’s Hospital of Philadelphia for connecting her with other children with chronic illnesses. The hospitals introduced her to Dragonfly Forest, an organization that hosts camp sessions for children living with chronic disorders including autism and hemophilia.

A childhood picture of Suhaylah and her younger brothers

“It’s an away camp for kids who have chronic or terminal illnesses to be in an environment with other people like them,” Suhaylah explained. Dragonfly Forest provided Suhaylah with a new sense of community, it also gave her a chance to experience new things.

“I did a lot of things that a regular Philly-city kid would never get to do,” she said. “I learned how to canoe, I got to stay in a cabin, I had experiences with people of different backgrounds. That was one of the greatest experiences of my life.”

Attending Dragonfly Forest let her know that there were other kids her age with similar health experiences. “It lets you know that you’re not alone,” she said. “A lot of times you don’t have other people around you with chronic illness that can relate to your problems, but being in an environment where all of the kids have the same struggles, it was [a great] environment.”

The camp left a lifelong impact on Suhaylah who attended four sessions in a row. As she grew older she continued to implement the lessons she learned at the camp.

Journeying into adulthood can be difficult, but for young adults living with sickle cell, growing up comes with a new set of challenges. Suhaylah has been to the hospital four times in the past five months due to sickle-cell related pain. “As you get older the disease changes, and as you go through different hormonal changes,” she said. “I might not have been as sickly as a child, but I feel it more as I get older.”

A sickle cell crisis can last anywhere from a few hours to a week. The pain can be aggravated by many factors including stress, lack of sleep, and dehydration. Living with sickle cell also weakens your immune system, requiring Suhaylah to take extra measures to avoid getting sick.

She also has to maintain yearly check-ups with specialists for her heart, lungs, spleen, and eyes to ensure that her organs are properly functioning. “It is frustrating! You want to be able to go about life every day, get stuff done and keep it moving,” she said. “But when you’re in an extreme amount of pain it’s hard.”

Thankfully, she has a strong support system of friends and family to help her stay positive. “My friends are honestly very helpful and supportive,” says Suhaylah, reflecting on the times her friends would accompany her to the hospital.

Her faith also plays a large role in her life with a chronic illness. Suhaylah is a dedicated Muslim and is looking forward to Ramadan, the Islamic month of fasting. Despite being told she wouldn’t be able to fast by doctors, Suhaylah tries to observe the fast to the best of her ability. “I don't feel like Ramadan is Ramadan unless I fast,” she explained. “Everybody is different, but I feel more connected to Ramadan when I fast.”

A painting event Suhaylah organized for Philadelphia's Muslim community

There is another aspect of her life that Suhaylah is waiting to prove doctors wrong about: having children. ”I can’t wait to prove them wrong about having kids,” she said. “Not anytime soon, but I do want to have a healthy pregnancy.” Until then, Suhaylah is planning another addition to her family as she is engaged to be married in the late Fall. “He’s really supportive and always there for me,” she said about her fiancé.

Suhaylah is also a student and is studying biology at Arcadia University. She plans on opening her own healthcare practice and wants to eventually become the CEO of her own hospital.

A woman of many talents, she is also an Arabic tutor and makeup artist. “I love makeup,” she said, “Especially the art of it, its a stress reliever and makes me feel better.” While some people may assume that her love of makeup makes her a “girly girl”, Suhaylah is also passionate about sports, loves sci-fi, and enjoys horror films. “The only thing that’s girly about me is the makeup,” she said with a laugh.

Although she was initially shy and avoided talking about her diagnosis, she is now a vocal advocate for sickle cell awareness. “I always was the person to shy away from telling people that I have a chronic illness,” she explained. “But now I want to advocate for awareness.”

Decades ago, sickle cell was regarded as a death sentence, but young women like Suhaylah are proof that people living with sickle cell disease are able to live prosperous and successful lives. With the help of early screening for newborns, vaccines, and ongoing medical research, things are looking up for sickle cell patients.

Sickle Cell Awareness Ribbon (courtesy of Amazon.com)

If you are interested in supporting sickle cell research, visit: https://www.nhlbi.nih.gov/news/2012/sickle-cell-disease-research-care

Suhaylah’s social media: