I’ve always been a little obsessed with having a great quality of life. I guess it makes sense considering I was told from a young age that my life expectancy and quality of life would be low.
It also makes sense then, that I’ve always been precious about how I spend my time, especially the older I get. That’s why I gratefully celebrate every single birthday I have, because aging is a privilege that few recognize.
The serious child
The year was 1990, and we were living in Hamburg, Germany. I was only 3 years old then. My parents tell me this part of my story as I don’t really remember any of it.
Apparently, I had an unexplainable, persistent stomach ache. When the doctors eventually came back with a diagnosis, they said, “Your daughter has sickle cell anemia, the most severe form of sickle cell disease.”
My parents were devastated. My mum cried the whole day and night after the diagnosis.
Originally from Sierra Leone, West Africa, they had only heard and seen nightmare tales of the sufferings and sudden deaths of people with sickle cell anemia (SCA).
Based on what they knew then, my life expectancy was set at 21 years, while my quality of life was expected to be interrupted by frequent hospitalizations, looking malnourished, and being ill all the time.
The diagnosis truly took my parents by surprise, because they never knew they were both carriers of the sickle cell trait until I showed up with the full-blown condition.
SCA is an inherited blood disease that causes red blood cells to be sickle- or crescent-shaped instead of round. These sickle-shaped blood cells do not live as long as healthy cells and can get stuck in blood vessels, leading to chronic anemia and oxygen shortage as the blood flow is obstructed. This obstruction is known as a vaso-occlusive crisis, or pain crisis, and can lead to severe joint pain, vital organ damage, and even death.
Looking back on my childhood in Germany with SCA, all I remember are the rules I had to stick to, to avoid being hospitalized, and being raised to teach others around me about the illness to foster awareness, acceptance, and critical support when needed.
Source: Medical News Today
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