“I Had This Disease That Nobody Understood”

Sesi Fall 2015 Issue Bryshere GrayWhen 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.

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 At- lanta, 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.

Read the rest of my feature for Sesi magazine’s fall 2015 issue [here].

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