“Eii, so you still have that thing?” This is what a friend said to me when I told her about this blog. My reaction? I laughed, laughed and laughed some more and then said, ” You just confirmed why I needed to start this blog.” Sickle cell anemia does not just go away. It does not vanish after a certain age. Once you are born with it -It is here to stay – well, unless you have a bone marrow transplant (This is another whole topic to discuss).
Some of you may be asking, what at all is this sickle cell that she is talking about? Well, let me just say, I am not a medical expert, so I cannot give you all the medical terms and all that come with it, but I am going to share what I know, so please bear with me. Sickle cell anemia is an inherited blood disorder, and basically what that means is that when you have the condition, your body is not able to produce enough healthy red blood cells to carry oxygen to the other parts of your body. You need the normal round blood cells to carry the oxygen, but in my case, some of my red blood cells become like a crescent. We say they are shaped like a sickle. The common genotype (another very important topic for discussion) for someone who has the sickle cell condition is SS, but there is also SC (which is what I have).
For an average person, who has the common genotypes of AS, AA or AC your red blood cells can last for approximately 120 days before they need to be replaced. However, for those of us with the sickle cell condition, it usually lasts for about 10 -20 days. This means that there is usually a shortage of red blood cells…and if there are not enough red blood cells, your body cannot get enough oxygen to feel energized, thus causing fatigue. This is the reason why many people who have sickle cell get tired very often. We are not lazy as some people think – we just get exhausted.
Another issue is when the red blood cells which move about easily, change their shape and become sickle-shaped. The sickle shaped red blood cells cannot move around easily like the round red blood cells so they get stuck at the joints and block small blood vessels, making it difficult for the blood to flow to it’s destination.When blood can’t get to where it’s supposed to go to, it can lead to organ damage and excessive pain – this pain is usually called a crises. I will talk more about what having a crises is all about in my next post.
Other symptoms of of sickle cell anemia include frequent infections – what happens is that, the condition can damage an organ that fights infections, such as the spleen, leaving you more vulnerable to infections. Furthermore, it causes shortness of breath, headaches, painful swollen hands and feet – this is because blood can’t get to those parts of your body. There is also, the yellow tint to the skin or the whites of the eyes, vision problems, which in some cases, can lead to blindness, a stroke and in some cases, death. These are just some of the symptoms. I cannot tell them all but, let’s just say that it comes with a load of baggage.
In spite of all that I have mentioned, having sickle cell anemia is not an automatic death sentence. It can be managed and you CAN live a very smooth life without all these complications. For me, it comes down to knowing myself well enough to be able to manage whatever comes my way, and honestly, it’s been going well so far. No complaints here!
I trust that this blog, over time will give you some useful information about sickle cell anemia. As you get to know more about it, I hope it will help you become a better ally, friend, sister, brother, or advocate. I encourage you to read more about it and learn more about it and its social, medical, physical and financial implications. There is still so much more to know.
The knowledge does not end here. This fight is for all of us!