What I Wish Everyone Knew About Sickle Cell
Let's start with the fact that sickle cell disorder doesn't get enough awareness as it should. What is even more worrying is that some people do not have access to the right information.
There are so many myths about sickle cell and people living with it hence when people talk about it, we should be worried about how true is what they say? Where do they get their information?
Anyways, the truth still remains that until we start telling our own stories, we cannot eradicate these myths.
Here are five things I wish everyone knew about sickle cell.
1. Sickle cell is not just about pain crises
When most people hear the word sickle cell, the first thing that comes to their mind is the pain crisis. Ask people what they know about sickle cell and the first thing they probably say is that people that live with it experience constant pain.
First, I hope they know that the common pain crisis they refer to is called a vaso-occlusive crisis. Vaso-occlusive crisis happens when the red blood cell changes shapes into a sickle shape due to certain factors like dehydration, extreme weather, stress, and more.
This sickled red blood cell goes ahead to block blood vessels, hence, blocking blood (oxygen) from flowing to some areas of the body. The affected areas begin to cause pain due to the lack of oxygen. This pain can then spread to other parts and cause serious pain.
So, there is the vaso-occlusive crisis, but there is more to sickle cell disorder than that. In fact, some people with sickle cell do not experience vaso-occlusive crises, others do but very rarely. The fact is that there is more to sickle cell than the crisis. There are complications that can be life-threatening like acute chest syndrome, stroke, and others. Also, sickle cell disorder can cause organ damage.
2. Sickle cell affects us differently
As humans, our genetic makeup is different. That is why some people are light-skinned, some are dark-skinned, and so on. The same applies to sickle cell. Sickle cell affects us differently. Every person with sickle cell has a different story to tell.
Person A with sickle cell might not have frequent crises yet deal with other complications like avascular necrosis while person B might have severe crises frequently and still deal with other complications. It is also important to note that our bodies react differently to things. Hence, what works for person A might not work for person B, and that doesn’t mean person B isn’t doing their best.
Treat every person living with sickle cell as an individual.
3. There is no peculiar look for every warrior
One common misconception about sickle cell is that every person living with it has a specific physique. People think every warrior is skinny. That’s not true.
Even though some warriors have that skinny body frame and young look, it doesn’t mean every warrior has. Some of us are chubby.
That’s why sickle cell disorder is referred to as an invisible illness. You can’t tell if someone lives with it or not merely by looking at their physical appearance.
4. Let us try before you think we can’t
Nothing hurts more than the regret of not trying. There is always that 'what if' regret.
Yes, your intentions are pure and you want the best for us. You want to help us live well with sickle cell as much as possible but that can get toxic sometimes. For example, thinking we cannot do something instead of helping us find ways we can do it easier is toxic.
No one likes depending on others every time. We all want to be free and do the things we love. So instead of reminding someone with sickle cell that they may get crises while having fun, help them have fun in a less stressful way.
5. Sickle cell affects other races
Sickle cell is a disease predominant among Black people, but anyone can have sickle cell. It can affect other people, whether they're Arabian, white, or Asian. All it takes is inheriting the sickle cell trait from both parents.
Anyone can have sickle cell although it may be a different variant depending on their ancestry. There are different variants of sickle cell disease, such as sickle cell anemia (HbSS), sickle hemoglobin-C (HbSC), sickle beta-plus thalassemia, and sickle beta-zero thalassemia.
Do you consider yourself an advocate for sickle cell?