Growing up, I don’t remember being told that I was a carrier of the sickle cell trait. Maybe I wasn’t born during a time when testing was mandatory for all newborns, like it is now. In fact, growing up I can only remember hearing about the disease once. There was one little girl in our community who had Sickle Cell Anemia, her mom was from Puerto Rico and her dad was black. I was around 8 or 9 and I remember her mom said that she was sick and may need to take medicine for the rest of her life. Everyday she took medicine for Sickle Cell Anemia. Unfortunately, she passed away at the age of 4 years old and I never heard or thought about it again. Well, I didn’t think about her until I was several months pregnant and my OBGYN told my husband and I that we both were carrier’s of the Sickle Cell trait.
At the time, a light bulb of understanding did not flash. We didn’t have any prior knowledge about the disease to understand what that meant. Instead of feeling emotional, we were both stoic. Then the doctor explained that we had a 1-in-4 chance of one or both of our babies being born with Sickle Cell Disease. For a few seconds in the doctor’s office, I felt like I was in the room by myself and the walls were caving in, at one point I thought it meant that my babies might die or our lives would be unbearable. I didn’t know what to expect and I didn’t know which questions to ask the doctor.
Thankfully, after leaving the doctor’s office, light bulbs of information begin turning on all around me. I started to see pamphlets about Sickle Cell almost everywhere, I found a booklet on the Metro, on my way to work, about Howard School of Medicine’s
Sickle Cell Disease Center. Not long after that, I found a pamphlet at church about Sickle Cell, and then I saw an article about it in Ebony magazine.
Maybe I was blind to news about Sickle Cell before it directly affected my life, but news and conversations about the disease are growing abundantly and should be worth mentioning in every household.
For now, my goal is to keep the conversation in people’s ears.
When our daughter’s diagnosis was confirmed, I had read enough information about it, so I wasn’t afraid. I knew that we lived in a great area and would be able to find a stellar doctor that would help us fight SCD and we have. My daughter is blessed, tremendously. She is a smart warrior who is fighting to live a healthy normal life as much as possible.
I’m not afraid to let people know about SCD, and encourage people to find out their status. Get tested so you’ll know if you carry the Sickle Cell trait, the information could save a life!
If you’re parenting a child that is living with SCD, then please check out this School Handbook for Children with SCD.
Want to join the conversation and share your story? Contact me at CleverlyChanging(at)gmail.com
Interested in joining the #BoldLipsForSickleCell challenge? Find out more here