Sickle cell disease, a blood disorder that affects red blood cells, is not something you hear about in a conversation between young women.
According to the National Heart, Lung and Blood Institute, sickle cell disease is a serious disease in which the body makes sickle-shaped red blood cells, meaning that the red blood cells are shaped like a "C."
Sickle cell conditions make a different form of hemoglobin A (hemoglobin is the main substance of red blood cells) called hemoglobin S, which stands for “sickle”. Since those cells become sickle-shaped, they have difficulties passing through small blood vessels, according to the Sickle Cell Disease Association of America, Inc. (SCDAA). There are several types of sickle cell disease: Sickle Cell Anemia, Sickle-Hemoglobin C Disease, Sickle Beta-Plus Thalassemia, and Sickle Beta- Zero Thalassemia.
Cyleer Love, 19, found out she had sickle cell disease when she was a baby.
“My mom found out at birth. I got it because both of my parents had the trait, which made me the only child of three that ended up with the actual disease,” said Love.
According to SCDAA, when both parents have the sickle cell trait, they have a 25 percent chance of having a baby with sickle cell with each pregnancy. If one parent has sickle cell anemia and the other parent doesn’t, all of the children will have the sickle cell trait. If one parent has sickle cell anemia and the other has sickle cell trait, there is a 50 percent chance of having a baby with either sickle cell disease or sickle cell trait.
Complications dealing with sickle cell are blockage of small blood vessels, less blood being able to reach a certain part of the body, and tissue that isn’t receiving a normal blood flow becoming damaged.
“There are a lot of different symptoms that come with having sickle cell disease; some are extreme and some are not so extreme, but they are all very painful at times,” said Love.
Medical problems that come along with sickle cell are damages to most organs, pain episodes (arm, legs, chest, abdomen or stroke), lung tissue damage, gallstones and anemia.
Love said sickle cell disease patients develop slower than the average child their age. She didn’t know why she was smaller than all the other children her age, meaning she didn’t know why she didn’t have any breasts and didn’t receive her menstrual cycle like all of her friends.
Most treatments with sickle cell patients are early diagnosis and include penicillin, vaccination against bacteria, blood transfusion, antibiotics, intravenous fluids and other pain management help.
When Love usually has pains, she takes Ibuprofen 800 mg and Percocet when she is at home. At the hospital, she is given Morphine through an IV. “All of these meds make me really drowsy, but they also take the pain away,” said Love.
Many sickle cell patients receive blood transfusions that help them reduce previous pains, risks of a stroke and other medical complications. In 2003, Love went through a difficult experience in her life getting a blood transfusion. She said it was a scary procedure to go through, but she had to get it done to get better.
“I don’t look at having the disease as a curse God put on me, although when I was younger I think I did. Now I just think of it as another reason to be something and do something with my life,” said Love.
Currently, the sickle cell disease has no universal cure, but it is a very important condition to know about. Knowing about this can help you know, and help you plan your future.
Love said she had her occasional moments when she would be in pain. There would be times when she couldn’t walk, was weak and had no energy.
“I don’t feel like the victim anymore,” said Love. “I just feel blessed to still be here and still be able to walk, breathe and smile every day.”
Photography By Billy Montgomery