HOW do you live with a disease that can cause sudden episodes of extreme pain? What do you do when the only thing that helps relieve the pain are powerful, addictive painkillers? How does a family manage the needs of a child with a chronic, untreatable illness? These are among the questions that people facing a diagnosis of sickle cell anemia have to answer.
Sickle cell anemia is an inherited disease that causes red blood cells to have a distinctive crescentlike, or sickle, shape. These cells are unable to properly carry oxygen throughout the body, and they tend to clump together, blocking blood flow, damaging organs and causing severe pain.
Affecting about 72,000 people in the United States, sickle cell anemia is most common among people of African or South American descent, but the genetic trait is also routinely found in people with ancestry from Central America, India, Saudi Arabia and Mediterranean countries. One in every 500 African-American births results in a child with sickle cell disease, according to the Sickle Cell Disease Association of America.
The challenges of living with sickle cell anemia are great, but with diligent care, the disease can be managed. Here, three people speak about the impact sickle cell anemia has had on their lives and families. Hear more: Patient Voices: Sickle Cell Anemia.
Andre Hinckson, 38
Queens
“With a sickle cell crisis, there’s a lot of pain, unbelievable pain. It’s like a jackhammer on your back, basically. Imagine that kind of pain throughout your whole body. Sometimes there’s pain in your joints, in the abdominal area, in your head, in your chest. Sometimes it’s all over at one time.
I wish people in the medical field would take the disease more seriously. I’ve had experiences where they’ve called me ‘drug seeker.’ It’s as if we’re going to the emergency room once a month or once a week for our drug fix. They treat us atrociously, and I’m just tired of the whole situation.
Some people, they smile — that’s how they deal with their pain. Me? I’m very serious, and I know people look at my face and they wonder why I’m so serious or so sad. Maybe its just because of what I’ve experienced, you know?”
Shanoah Moore, 8
Cincinnati
“Every time I have a pain episode, I either get a heating pad or they take my temperature. If it’s over 101, that means I have to go to the hospital.
I know when I’m getting sick because my head starts getting warm, and my mom knows because my eyes kind of turn yellow. It feels like someone is just squeezing my legs or arms. Sometimes it’s very, very painful.
Normally in the middle of the night, I just go and get the heating pad and go back to my bed, but when I wake up and it feels worse, then I just go to my mom or dad. “I don’t like getting sick. I still want to be in school, so I can be there and not be absent a lot.”
Tiffany Dews, 33
Richmond, Va.
“When I first got pregnant, my intention was not to be a stay-at-home mom. My intention was to work and finish school, but of course, plans change.
Both my husband and I have the trait for sickle cell disease, and combined we have two children, Tracy and Riley, with the disease. There’s a one in four chance each time we decide to have kids that we would pass on the disease.
Years ago, [children with sickle cell disease] were not making it past the age of 20 or 21. So my hope is that they will have kids, and hopefully not have kids with the disease.”
