On World Sickle Cell Day 2025
It's another June 19 when we celebrate sickle cell warriors. Just a few notices before we go on.
What is Sickle Cell Disease?
Sickle cell disease (SCD) is a genetic disorder that affects the production of haemoglobin in the red blood cells, typically characterized by malformed (sickle-shaped) red blood cells. This leads to several health challenges like anaemia, pain crises, organ damage, infections, etc.
Sickle cell disease is basically inherited from one's parents and most sickle cell warriors (there are people who have claimed a miraculous genotype change) live all their life with it. The American National Institutes of Health's website lists blood transfusion and bone marrow transplant as potential cure for SCD.
The bigger hand is mine. I'm fighting alongside a warrior.
Cause
I am not a health personnel. My training is in the Humanities so I may not be entirely accurate with the cause of SCD. But I'll try, to the best of my ability, to explain what I read.
Sickle cell disease is caused by a mutation in the HBB gene (The HBB gene encodes the beta-globin protein, one of two types of protein chains which make up hemoglobin, that carries oxygen in the red blood cells). Let us mark this part as 'S' in genotype.That's not all; a person has to inherit two copies of this mutated gene (one from each parent) to develop sickle cell disease. Now, that's a full 'SS' genotype. Phew! I hope I've not confused you.
Wait, a person that has only one copy, is also a carrier but may not show symptoms. This person may pass the 'S' trait to their offspring.
Symptoms
Sickle cell warriors exhibit several symptoms, the most common of which is episodic pain crises. This involves severe pain in the chest, back, arms, legs or joints. This pain is better left to the imagination. I heard an audio recording of an SC warrior in crisis. I could barely listen to the entire five minutes of the recording. It's nothing anything I've ever seen or imagined. My heart shattered to smithereens.
Another symptom is constant fatigue due to anaemia. While people without the general mutation may wake up to a 100% energy, it is said that sickle cell warriors wake up with 50% energy. While I've seen one warrior do very strenuous activities on campus (I didn't even know he was a warrior), most warriors will not be able to keep up with the pace of very strenuous physical exertions.
Other symptoms include jaundice, vision problems, swelling of the hands and feet, etc.
What Now?
Every year on the 19th of June, we (today is MY first, though) try to spread awareness sickle cell disease on social media. But beyond the posts, what else? What are we doing on ground to make sure more children are not born with sickle cell disease?
Personally, I think we need to organise more outreaches especially to rural areas to educate people on genotypes and implications in marriage and child-bearing, undertaking genotype tests alongside. This will not be easy, both in human resource and financial strength. But we can start somewhere. Let me know what you think in the comments.
