Here is another blog that I hold near and dear to my heart. This month’s blog, though it’s posted on the very last day of September is about Sickle Cell Awareness. When I was 13 was the first time I was introduced to Sickle Cell, my best friend’s mother passed away, she is featured below. If you follow me on Instagram (@publichealthnotebook) you know that September is National Sickle Cell Awareness Month, each week for September I highlighted the important aspects of Sickle Cell Disease. For those who are unfamiliar with this disease, Sickle Cell Disease is a genetic blood disorder. It mainly affects Black people and people of East Mediterranean descent. Read on to learn more about the cause and genetics of Sickle Cell Disease, its symptoms, and why Black people are disproportionately affected.
Basic Info
Sickle Cell Disease (SCD) is caused by a genetic mutation that results in an abnormal blood cell shape. Blood cells are supposed to be round. SCD causes sharp, crescent-shaped cells. This mutated shape causes a whole host of symptoms.
Sickle cell trait is when you carry one part of the gene mutation that causes SCD, but you do not carry the other part. If you were to have children with someone who also had trait, there is a chance you could have a child with SCD.
People with SCD often suffer from episodes of debilitating pain called crises. They are also more at risk for infection, stroke, blood clots, and many other symptoms and consequences.
The Black Community
In the United States, SCD affects about 100,000 Americans. Because it is a genetic condition originating in Africa, it mainly affects people who originated from Africa. It is estimated that about 1 out of every 365 Black Americans are born with the disease. An even greater number, 1 in 13 Black babies, are born with sickle cell trait. Black people are much more affected than white people. Specifically, there were 73.1 cases of trait per 1,000 black babies versus 3.0 cases per 1,000 white newborns.
The disproportionate prevalence of SCD in Black people has historically affected the community. Prior to 2000, Sickle cell-related death was higher. After the development of a pneumococcal vaccine in 2000, sickle cell-related death fell by 42%. While deaths have decreased, SCD still takes an emotional toll on the community. It is a very painful disease. SCD can cause such pain that their daily lives are limited. Some are not able to play sports. Frequent hospitalizations for pain can disrupt their education or ability to hold a regular job. The emotional burden of the disease on the community is difficult to estimate. While the economic burden is high, the emotional burden is incalculable. Hopefully, scientists can discover more about this disease and ways to treat it.
Loving someone with Sickle Cell Disease
How has Sickle Cell affected your life?
Sickle cell disease has affected my life tremendously. I lost my mother from the disease when I was 13. Her older sister, whom I never got the chance to meet, also died from sickle cell. I do have 3 close friends with the disease as well and it hurts my heart to see them in and out of the hospital when they have crises.
How important is it that you bring awareness to Sickle Cell?
It is important that we bring awareness of sickle cell disease because this disease actually affects POC directly. Can a white person be affected by sickle cell? Yes, but it is uncommon. I think because this disease is predominantly in the POC community, it is overlooked and not taken as seriously as it should be.
Do you remember how your mom would explain her crisis?
Growing up, my mother did not really express if and when she was in pain. She was very strong! After she had my little brother, she spent more time at the hospital. Once she felt better and was out of the hospital, she’d jump back into daily routines like normal. I didn’t realize till later on life that when she would spend those couple days in the hospital, she was actually having a sickle cell crisis. She was actually in a lot of pain. I know that it was probably very hard for her and I thank God for blessing me with a fearless mother.
How important is it to you to know if your significant other has the trait?
All my life, my family has told me and brother to make sure that when we get older, get married and start a family, our significant other did not posses the trait nor the disease. So it has always been ingrained in my head. It is important that we start to weed out this disease. Let’s get a little deeper- I have the trait. I am not diagnosed with the actual disease but I carry the disease in my DNA. Therefore, it can be passed to my offspring if I reproduce with someone who either have the disease or the trait. With someone like me who is just a carrier and I have a child with someone who does not have the trait nor the disease, our offspring will not have it either! It’s more complicated than this but this is the idea!
Comment below a Sickle Cell Warrior that you love <3
Comments