What is SCD?
It dawned on me that many of you who are not close friends have no idea why I'd be in pain or learning to crochet ;)
Well it's because I have Sickle C disease, a "mild" form of Sickle Cell Disease. I say mild because at the moment, I'm sure my pain could match someone with full blown sickle cell anemia. Take a look at some personal anecdotes from people with the disease as written for the New York Times.
Pain, Persistence, Family - Sickle Cell Disease
SCD is such a complex disease that it has been called invisible due to the pain that is internal and that varies from person to person. No one can readily see the affects of this disease and have no idea how to relate to you while having a pain crisis.
Why is there pain? Because individuals with Sickle Cell Anemia, Sickle C Disease and Sickle B disease have abnormally shaped hemoglobin, or blood, which can often get stuck in the veins which can cause pain in several different areas of the body. Blood cells can also get stuck in some of the body's organs such as the spleen (if the person still has one) and lungs.
Take a look at this picture which demonstrates the difference between normal hemoglobin and the hemoglobin of an individual with SCD.
When we look at this picture, it is pretty obvious why there is pain involved with this disease. One major evolutionary fact of the disease is that individuals with SCD cannot contract malaria. I put this in italics because I do not believe in evolution although that is another blog in itself. I digress.
Just yesterday I was asked by, to protect their privacy, someone close to me, if I was making up the pain. Right.
- Because there is nothing better than to lie about the degree or severity of my pain and having my whole body feel like I have been beat up.
- Or being unable to sleep because I am so uncomfortable and hurting too bad to fall asleep.
- Being too fatigued to do anything but bear with the pain for a few hours before having to lay down only to fall asleep, wake up in pain and repeat.
- Not being able to see as clearly as I used to with these black spots floating in front of my eyes.
- Having to take off my wedding rings because my fingers and feet have swollen up so bad that I am afraid they will get stuck.
- Oh and because I love missing out on doing things with friends and family...
This is just a few things on my list that I would love to fib about but can't because the reality is these things happen.
And they happen often.
More so now than when I was a child. This disease complicates a lot of things that should be easy, such as school and deadlines and work (depending on which field you are in), etc. And in the mist of all of this, there are the people who don't believe the disease's effects on my life because it's invisible or because they fail to become educated about it.
I am going to guess, that if you are reading this, you have a desire to learn more about it. Although most of the information you find when you google SCD will not be in layman's terms, there is some valuable information out there.
If you do any further research, happy hunting.
And they happen often.
More so now than when I was a child. This disease complicates a lot of things that should be easy, such as school and deadlines and work (depending on which field you are in), etc. And in the mist of all of this, there are the people who don't believe the disease's effects on my life because it's invisible or because they fail to become educated about it.
I am going to guess, that if you are reading this, you have a desire to learn more about it. Although most of the information you find when you google SCD will not be in layman's terms, there is some valuable information out there.
If you do any further research, happy hunting.
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