by Julie Morcate
Although many people have heard of sickle cell anemia, which affects over 60,000 Americans, few know the many health complications of the disease and the different ways to raise awareness.
Robert MacAuley, a Rider student in the organizational leadership graduate program, set up an informative event in the Bart Luedeke Center Fireside Lounge for his project seminar course under the umbrella of the Black Student Union (BSU).
“I had to come up with a project using leadership skills,” MacAuley said. “I didn’t have the license to hold a raffle, so I decided to make this an educational night. Education and fundraising are the two big things when it comes to sickle cell anemia.”
This condition is an inherited blood disease that can cause many health problems, including damaged blood vessels and unpredictable attacks of severe pain. The disease primarily affects African-Americans.
Robert MacAuley introduced his older brother, Bunting MacAuley, who has sickle cell anemia, as the first speaker. Bunting MacAuley gave an informative presentation on unknown details about it and what everyone can do to help.
“People don’t really know what sickle cell anemia is,” he said. “They don’t want to pay particular attention, but we ask that everyone have a little more understanding.”
Bunting MacAuley also addressed those in the audience who have sickle cell disease. He encouraged them to be vocal about their condition.
“You can tell your bosses and your professors, ‘Hey, I’m here, but I do get sick,’” he said. “‘I’m not trying to take more sick days or vacation days off — I’m just trying to get well.’”
Bunting MacAuley concluded his presentation by telling the audience what they could do to help.
“Become involved, increase awareness, donate blood and get tested,” he said.
The next speaker was E. Joe Tsogbe, a 22-year-old student at Middlesex County Community College. He spoke about the symptoms of sickle cell disease, like jaundice, chronic fatigue and high blood pressure, and what causes it. He also answered questions about how sickle cell disease affects the immune system.
“It’s weaker than a normal person’s because of a lack of oxygen in your red blood cells,” Tsogbe said. “When not enough oxygen goes to your heart, you can have a heart attack. When not enough oxygen goes to your brain, you can have a stroke.”
Emphasizing the difficulty of growing up with sickle cell disease, Tsogbe urged the audience to get tested.
“If you and your partner have the trait, then one out of four of your kids will have the full-blown disease,” he said. “Since the United States is built upon the migration of other cultures, you want to get tested and prevent having children with sickle cell disease.”
Regina Burden, an audience member whose daughter has a type of sickle cell disease, works as a parent advocate for the Pediatric Advanced Comprehensive Care Team.
“We’re here to raise awareness about sickle cell because it is the forgotten disease,” she said. “We want to tell people about it and how they can raise awareness, even if they donate just a little of their time.”
Burden also pointed out the serious consequences of the illness.
“People lose their jobs because of sickle cell,” she said. “It’s chronic — you have to deal with it for the rest of your life. We want to provide for all the needs of every sickle cell patient. For example, children need to be classified and get into special education programs.”
Right after graduating from high school, Tsogbe had total hip replacement surgery. Recently, he had surgery on his left hip.
“These surgeries aren’t common for most young people,” he said. “But we don’t like when people feel sorry for us. Treat us like regular people because that’s what we want to be.”
The next speaker, Paul Ahaski, is the development manager from Embrace Kids Foundation. This organization provides an array of services to kids and their families. It has an annual budget of over $1 million.
“It’s devastating to have a child with an illness, but we try to make an unbearable time more bearable,” Ahaski said. “We create a specific plan for each child, make sure they don’t miss a step. We also provide emergency financial assistance: We’ll step in and pay the rent, car payments, mortgages and for air conditioning in summer and heat in winter.”
Leslie Hammond, her husband Andre Hammond, and their two children were the final people to speak. Their son, Jonathan, 11, has sickle cell anemia.
“Sickle cell disease is not an easy thing to deal with,” she said. “The worst news you could ever receive as a mother is that your child has a blood disorder — and at six months old.”
Leslie Hammond admitted that she and her husband knew nothing about the disease, but they went in to the doctor’s to become educated about it. They discovered they both had the sickle cell trait.
“The information we learned was devastating,” she said.
Jonathan was 6 years old when he felt the first pain from the sickle cell disease.
“He complained that his arm hurt, and then his leg,” explained his mother. “He bit me on the car ride to the hospital — that’s how much pain he was in — but nothing he did could take this pain away. At the hospital, they got him fluids and drugs.”
Unfortunately, this wasn’t the end of Jonathan’s distress from this disease. At the age of 8, he had gallstones.
“Every single vital organ in your body gets affected by sickle cell,” Leslie Hammond said.
Her son then told the audience a story.
“I couldn’t learn how to swim before, but I finally learned this past summer after taking a new medication, hydroxurea,” Jonathan said to the audience, which erupted into applause.
“We want these children to live normal lives and be successful,” Leslie Hammond said. “Anyone can volunteer. You can fundraise or make people aware of it. Any support you can give is highly appreciated.”
Ultimately, the Hammonds insisted that sickle cell is not a disease — it is a lifestyle. They prefer not to subscribe to debilitating labels, instead adopting a positive outlook.
“We don’t like to say that Jonathan has a disease — that’s a yucky word,” they said. “We just deal with it on a day-to-day basis.”
The Hammonds also expressed their gratitude to Embrace Kids Foundation. “Our house was on foreclosure, and Embrace Kids came in and paid our mortgage,” Leslie Hammond said. “We might have lost our house without their help.”
To learn about events, fundraising or group meetings, visit the organization’s Web site at EmbraceKids.org.