All my life, I have always felt different. I am sure you are expecting me to say something great but I am sorry, I am going to break your heart.
My sickness came from an ailment that was going to define me if I allowed it to. It already made me feel like a cast out because I couldn’t do what everybody else could.
Whenever I tried to play as a child, my mother would scold me and prevent me from having ‘FUN’ because my health was at stake! This were the words of a twenty-year-old boy I spoke to during my service year in the university college hospital who had come for a rehabilitation after one of his sickle cell crisis.
Sickle cell anemia is a blood disease characterized by an abnormal looking red blood cells which is inherited by carrier parents. A normal red blood cell looks like a doughnut without the hole, this is so they can travel through any vessel and also transport oxygen, but in a sickle cell patient, the red blood cells are shaped like a sickle or a crescent moon which makes them get stock in small vessels which can slow or block blood flow and oxygen supply.
To a sickle cell patient, life isn’t as we all see it, it is a more complicated struggle characterized by different feelings and thoughts. Yes, I bet you never knew that it was that twisted, well here’s a little expository information.
A sickle cell patient suffers from multiple episodes during their lifetime known as crisis. A crisis is an episode of severe pain and breakdown that can lead to a hospitalization or a blood transfusion. These crisis are caused when a sickle shaped cell blocks blood flow to smaller vessels, this leads to severe pain that can last for hours or even weeks.
These pains can lead to bone and joint damage in some individuals. Patients with this blood diseases are prone to infections due to damage of organs that help fight infections such as the spleen, this is why doctors give children with sickle cell vaccinations and antibiotic to prevent them from having more life threatening infections such as pneumonia.
An individual living with sickle cell disease may also have swelling in the hands, feet and abdomen as a result of inadequate blood flow to these areas caused by the sickle shaped blood cells blockage, these areas may also be tender to the touch.
I am sure that by now we all know that having a delayed growth isn’t far fetched because the red blood cells transport the nutrients and oxygen needed for development, therefore a shortage in red blood cells can lead to a stunt growth.
Some patients may even have vision problems caused by blockage and this can damage the retina which is the vision center of the eyes, leading to vision problems.
In sickle cell patients, the red blood cells live only 10-20 days instead of 120 days which leaves the patients with shortage in red blood cells, this is called anemia.
Ok so now after knowing all the symptoms, I’m sure you think that’s all to it? Nope, we haven’t even started.
Imagine a child who can’t go out to play with his friends in the sun, can’t dance in the rain, can’t eat doughnuts, can’t drink juice, can’t go to school without a sweater even on warm days, can’t take roller coaster rides, takes a routine medication all his life and spend most of his days on an hospital bed?
There is not much of a childhood left after loosing all those fun times. When this child now becomes an adolescent, his mates are having beards, having a growth spurt and for a girl her mates are becoming more womanly and then they are stock in the body of a child, wondering why they are different and cant be like everyone else their age. This alone can lead many into depression.
After a while they begin to hear how they may not live above the age of 25, say they actually pull themselves through that, they are now face rejection after rejection from different job applications because of their health status even if they can deliver on the job. Is it really that bad? Yes, it is.
The truth is with proper management and supervision, an individual would not need to go through all the unpleasant life changes and also live a long and healthy life. Yup, a healthy and “fun” long life! No doubt, “Most patients suffer intermittent pain crises, fatigue, bacterial infections, and progressive tissue and organ damage. Impaired growth and development is the end result of the physical and emotional trauma that is endured by children with sickle cell anemia” but then there are ways to improve quality of life.
Also, contrary to the popular belief, sickle cell disease is not a “black gene.” It just happens to occur more in the black population, I would like to believe that it was a mutation to fight malaria as studies show that the sickle cell gene is a malaria resistant strain, but an individual with sickle cell disease is more prone to malaria. the sickle cell gene is present in all races.
So, back to ways to live a healthy and fun life for longer. The first is to drink a lot of water, yes it can be very boring sometimes, so you can add some fruits into your water to give it some flavor, or eat your water, I mean eat fruits like cucumber, strawberries, tomatoes, water melon, pineapples, oranges and many more interesting fruits. You can also blend these fruits into delicious smoothies or juices depending on your preference.
Take you medications seriously and your rest even more seriously. Sometimes, taking routine medication can be very tasking, but who says it has to be? Pair your folic acid with a movie you like or a food you like eating. Its also found in food as a nutrient so who says you cant chew it with that sweet devotion you have everyday? After an outing or a stressful day, try to get enough rest, for younger kids, they can take siestas.
Take it easy on yourself, the truth is every individual has a unique body type and we all develop differently so don’t be too hard on yourself. The emotional stress is even worse than the physical stress and can take a toll on your health.
Find something worthwhile to do, don’t wallow in pity and shame, aspire to be successful no matter the odds.