“I Had This Disease That Nobody Understood”

Editor’s Note: Sadly, we learned Bri lost her battle with sickle cell in the early morning hours of Tuesday, April 9, 2019. We’re honored we were able to share her story with you all. Please visit the Sickle Cell Disease Association of America for more information on this condition and how you can help raise awareness.

With 1 in 500 African Americans living with sickle cell, chances are you probably know someone who has been affected by it. Find out how one girl is battling her SCD and refusing to let it define her.

By Princess Gabbara

When Brianne Lee — a 19-year-old aspiring cosmetologist from Maple Shade, New Jersey — was hospitalized back in June for a sickle cell-related illness, the last thing she expected was for her roommate situation to go all the way left. “I had only been in the room for a day, and I knew I was to have a roommate seeing as it was a double room,” Brianne says. “A mother and her daughter, who was about 11, walked in and settled down in the room. The mother asked the nurse what I was diagnosed with because she couldn’t have her child [who already had lupus] getting even more sick,” she explains. “Eventually, she found out I have sickle cell disease and lashed out. She requested she and her child be put in a single room and that they deserved it because they didn’t know if I was contagious. It was absolutely shocking.”

Although she pretended not to hear the woman’s remarks and decided not to say anything about what went down to her doctors and nurses, the incident still left Brianne in tears. And unfortunately, Brianne is no stranger to this type of reaction to her disease. Diagnosed at just six months old, she’s had to deal with people making false assumptions and shady comments for most of her life. “Throughout my childhood, I remember kids always having something negative to say, whether it be them thinking that I’m contagious or just being treated badly because I had this disease that nobody understood,” she reveals.

Photo courtesy of Brianne Lee
Photo courtesy of Brianne Lee

For the record, you can’t catch sickle cell. It’s a hereditary blood disorder that can only be acquired if both parents carry the sickle cell trait. If that’s the case, the child has a 25 percent chance of inheriting the full-blown disease. In people with sickle cell, the red blood cells are rigid and shaped like crescent moons, instead of having the soft, round shape of a normal red blood cell. “The blood itself gets caught up in the vessel’s walls,” explains fellow sickle cell warrior Dr. Lakiea Bailey, executive director of the Sickle Cell Community Consortium and a molecular hematology and regenerative medicine research scientist based in Atlanta, Georgia. “On top of that, the sickle-shaped cells can’t get through, so all of that stops blood flow, leading to a very painful [episode that’s] called a vaso-occlusive crisis, which leads to organ damage, leg ulcers, and all kinds of things,” she says. Other complications include, but are not limited to, swelling of the hands and feet, increased risk of stroke and infection, lung problems, infertility, organ damage, hypertension, and kidney failure.

While Brianne was diagnosed with sickle cell SC, a form considered to be less severe than the other types (there are several), she still has crises and spends her fair share of time in and out of hospitals. “I can have anywhere from a little bit of a headache to full-body excruciating pain that has me in tears,” she shares. “I’m always in the hospital, usually because of pain and it definitely ruins opportunities. I did have the chance to pursue my dreams and attend cosmetology school, and unfortunately, I was unable to do so because of the schedule of school, the placements of my doctors’ appointments, and everything else. So now, in between hospital trips, I’m volunteering at the Animal Welfare Association. Even that’s a struggle to do when I’m constantly in pain and fatigued,” she says.

Photo courtesy of Brianne Lee
Photo courtesy of Brianne Lee

Because sickle cell can be deadly, people who have the disease need to take several precautions on a daily basis to ensure that they stay out of the hospital as often as possible. That means staying hydrated and avoiding big crowds, stressful situations, high altitudes, rigorous exercise, and extreme weather conditions, just to name a few. “While away from home for more than a day, I have to pack my meds, think ahead about pain … and make sure there’s a proper hospital near me,” says Brianne. “It’s a real eye-opener.”

Another eye-opener? People with sickle cell don’t always look sick. That doesn’t mean they’re not in some serious pain, though. To help others understand that, and to dispel other myths surrounding SCD, Brianne took to Tumblr to chronicle her ups and downs of living with the disease. She even encourages her followers to ask any questions they may have about it — nothing is off-limits. “Making more people aware that [sickle cell] is a … serious disease can do so much,” she says. “It can help educate others.”

Photo courtesy of Brianne Lee
Photo courtesy of Brianne Lee

Despite the difficulties of living with sickle cell, Brianne has never thought of herself as a victim and she’s certainly not about to start now. How does she do it? “I tend to look at the brighter side of reality. I could have it so much worse,” she says. “I also feel like if I stay positive, I won’t feel as bad as I might if I just focused on the bad aspects or if I just sat around sulking.” A family that has her back also helps her get through the tough times. “I have a pretty solid support system and that mostly includes my mother,” Brianne says. “She’s such an amazing and strong woman who does nothing but love and support me. She helps with appointments, medications, and so many other things.”

For Brianne, the support of family and friends means so much. They don’t treat her like she’s sick all the time and they’re there for her whenever she needs anything. She’s also big on keeping the faith and has this to say to others living with SCD: “Don’t underestimate or give up on yourself. It’s hard … but do not let that pull you away from being strong …You can accomplish anything, as long as you put your all into it and genuinely want it. If you fall, just pick yourself up and try again. If you feel down or depressed, reach out to someone and let them help you. You do not have to be alone dealing with this.”

This article originally appeared in Sesi’s Fall 2015 issue. Subscribe here to get the current issue, on sale now.

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6 thoughts on ““I Had This Disease That Nobody Understood”

  1. I have sickle cell. Reading this story broke my heart, especially knowing that she has now passed. It’s not an easy disease to live with and often times can be very lonely. Praying for her family.

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