Do you know that approximately 100,000 people in the United States have sickle cell disease, and more that half of the sickle cell disease community lives in just 10 states, with North Carolina being one of those states, according to www.joingens.com?
Another very interesting fact shared from that website, is people of African ancestry make up 90 percent of the population with sickle cell disease (About 1 in 365
African Americans is born with SCD.) in the United States.
September is Sickle Cell Awareness Month; during the month, many may pause to educate and bring awareness about sickle cell disease, perhaps share stories of people living with the disease and the effects sickle cell plays in their lives. Some may even participate in a walk or some other event to raise money for research. Even though research tells us that in the United States, sickle cell disease is most common in the African American community, persons of Mediterranean, Middle Eastern and Indian ethnicities as well as others suffer from it as well.
The North Carolina Department of Health and Human Services defines sickle cell disease as a group of related inherited disorders passed from mothers and fathers to their children. Sickle cell disease affects the main protein inside the red blood cells called hemoglobin. Hemoglobin in the red blood cells carries oxygen from the lungs and takes it to every part of the body. The main hemoglobin in the red blood cells of people with sickle cell disease is not normal. Normal red blood cells move easily through the body because they are soft, round, and smooth. With sickle cell disease, red blood cells become hard, sticky and are shaped like crescents or sickles (a farm tool). The sickle shape of the red blood cell makes it difficult for the blood cells to move through small blood vessels. When sickle-shaped cells block small blood vessels, less blood can reach that part of the body. This blockage prevents red blood cells from transporting oxygen to the body and causes pain that can start suddenly; the pain may be mild to severe, and can last any range of time resulting in what is known as a sickle cell crisis.
For the last few years, I have shared stories of local citizens who live with sickle cell disease, and what amazes me is their strong will, drive and unstoppable determination. This year, I had the pleasure to meet and talk to Gabrielle Kearney, the daughter of Al and Wanda Kearney. Gabrielle has a warm, glowing personality that exuded her smiling, calm and jovial nature through the telephone!
A 2012 graduate of Warren County High School, Gabrielle is very proud to have been an honor student as she recalls her ability to consistently make high grades, her superpower, “I could miss school for a week and never get behind,” she touted.
Gabrielle told me that she loves to laugh, and watch retro shows on television, some of her favorites being “The Nanny,” “ The Big Bang Theory,” and her all time favorite, “The Fresh Prince of Bel-Air.” On a side note, she says that she stays away from reality shows, because they are too stressful. Gabrielle also thoroughly enjoys her career, which affords her the opportunity to help people who can’t afford their medications.
I asked Gabrielle to tell me about living with sickle cell disease. She said, “People know of sickle cell, but they don’t really know about it. I found out about it when I was about five years old. I had to stay in the hospital for about one week. It was around that time that I kept losing my spot in daycare because I would get sick, and they said I could get others sick. I had a weak immune system and it was easy for me to get sick with a cold, throwing up, my legs would hurt really bad and I would whelp up from head to toe.”
Around that time, Gabrielle says that she was sad and couldn’t relate to other kids. She recalls always being the kid who had to take a break and always being singled out.
Gabrielle describes the pain caused by sickle cell disease as a pain that you cannot see, and nobody really knows what’s wrong. “When people can’t see things, they don’t feel like it is real, and they just don’t understand.”
Gabrielle goes on to say that she has even encountered doctors who did not believe that she was having a sickle cell crisis, and one doctor even told her that she did not have the disease. Incidents such as these have led Gabrielle to embrace and seek care at the Duke Sickle Cell Clinic where they specialize in and offer comprehensive care and acute management in SCD.
Gabrielle describes a typical sickle cell crisis for her as a throbbing pain that starts in her legs and becomes so irritating that she can hear pain in her ears. It causes her to throw up everything she eats and develop hives on her legs, and her face swells.
While Duke provides outstanding care to Gabrielle, she boasts about her dream team at home. Gabrielle thanks her mom for being her greatest champion; “My mom knows how to deal with it. She stays calm, keeps me calm and makes sure I am taken care of. She knows where it hurts and can describe it to the doctors.” She describes her dad as being there, but more of a background person, and has to go home and recharge.
“And it does take a village and Grandma’s prayers really do help.” says Gabrielle as she talks about the other half of her dream team, her grandmothers. “If I get sick, I know both of my grandmas are coming!”
Gabrielle also stresses that living with sickle cell disease makes it necessary for one to rest, stay hydrated, listen to your body everyday and take care of yourself. And for those who do not have sickle cell disease, she simply says, “Be kind. You never know what a person is battling with, and when we vent about our pain, it’s not because we want sympathy; it’s because we need your support.”
Research on sickle cell disease and various public health programs have helped to educate the public extensively on sickle cell disease. The North Carolina Sickle Cell Syndrome Program was established in 1973, and is a part of the Department of Health and Human Services. According to www.ncsicklecellprogram.org, their mission is to promote the health and well-being of people with sickle cell disease and increase awareness of the disease and it’s complications. The program provides services to individuals affected by sickle cell disease and their families as well as genetic counseling, infant testing and education to the general public.
To find out more about sickle cell disease, visit www.ncsicklecellprogram.org
T. A. Jones is a freelance contributor to The Warren Record and the author of “The Parent Push, Helping Your Child Succeed Through High School and Beyond.” To contact her, visit tajones.org.