That's right. My secret is out! I have Sickle Cell Disease (SCD) also known as Sickle Cell Anemia. I am stepping out from the shadows into a role of active advocacy for Sickle Cell in order to help de-stigmatize the disease and bring awareness to the estimated 100,000 lives living with Sickle Cell in the USA.
This is my story and is dedicated to all lives affected by this disease.
It wasn't until after I was born that a few states began to implement testing for blood disorders including Sickle Cell Disease (SCD) due to the national recommendation. At the time of my birth, it was not required by my state and no one was aware that I had this genetic blood disorder. In fact, it wasn't found out until I was 2 years old. It has been reported that only since May 1, 2006 have ALL states been required and provided universal newborn screening for SCD despite the national recommendation to this effect in 1987.
Someone with sickle cell disease has both typical red blood cells (shaped like a doughnut) AND more abnormally formed red blood cells (shaped like a banana or a garden sickle). It is harder for those abnormally formed red blood cells to easily travel through blood veins and can often clump together, block the blood vessel, cause sever pain known as a sickle cell crisis and other harmful effects to the body.
Sickle Cell is a genetic (inherited) blood disorder passed down from parents to their children. If neither parents has the disease nor the trait, neither will the child. Someone can be born with the sickle cell trait if a parent is a carrier of that trait and someone can be born with the disease (like me) if the trait, or disease is present in either parent.
Both my mother and my father were carriers of the disease, meaning they both carried the sickle cell trait. When I inherited genes from both my mom and dad, I received a sickle cell trait gene from each of them, meaning I was born with the disease. It was unknown to everyone that the sickle cell trait was found on both sides of my family, that's the only way I could have been born with the disease (neither of my parents had the full disease). I was that 25% as depicted by the common punnett squares we see. Because I have the disease, regardless if my partner has this blood disorder or not, our children will carry the sickle cell trait!
After taking a trip to visit family in Denver, Colorado as a toddler, I got a bad case of Pneumonia and had to be taken to the hospital. This is when it was realized that I had SCD and probably shouldn't have gone to a place with such high altitude. High altitude can affect someone with SCD VERY negatively due to the lessened amount of oxygen and the lower amounts of oxygen in a persons blood. If someone has a blood disorder such as SCD especially, high altitudes can cause a person to go into crisis and could cause major organs to fail. Luckily I wasn't exhibiting any issues while on the trip visiting family. Once it was found out that I had sickle cell disease I was on Penicillin until the age of 5 and had quite a few more doctors appointments than other kids I knew growing up. It was normal for them to take 6-7 vials of my blood during visits to test and to study. As I got older, doctors called me a miracle. They hadn't met anyone with the full disease who was as healthy as I was...all the time. It was explained to me and family that people with SCD are regulars at the hospital, they come in often due to the severity and frequency of their crises. We were told that beds were always prepared and waiting for them, but when I came, no one remembered me - I had no bed with my name on it, and that was a good thing they said. I am blessed! I've only had one sickle cell pain crisis in my life and I will never forget it, I was 11 years old. It was the absolute worst, most severe, sharp, debilitating pain I have ever felt. This happens to people with SCD multiple times a week in some cases. I am blessed.
My TRUTH: I am extremely blessed to be as healthy as I am, people who know I have SCD often forget I have it...but this is still a disease that I have that can take it's toll at times. I'm afraid of making this blog post live! What about the potential outcome when I become pregnant? Will I have a healthy pregnancy? What will my children experience when it comes to Sickle Cell? What will my partner say? What will their family say about me having SCD? Will people think differently of me? What impact could I possible make in the community? Will people accept me? Those are the things I wonder.
Often times individuals with sickle cell are highly taken care of as children, but then when they reach adulthood some aspects of care, access to care, added barriers are often experienced. There are people living with this disease who get mistreated by physicians, denied their medication at the pharmacy and may experience a lessened quality of life than they would prefer due to complications with their health living with sickle cell! BECAUSE I am able, I am an advocate! I am a Sickle Cell warrior and I want to help, so I am. Together we can find a cure.
Do you know anyone affected with the disease or trait? Will you share what you've learned?
with love,
D