WHAT DO YOU DO WHEN YOU KNOW ABOUT SICKLE CELL

By FeBi

"I like knowing but the things I want to know I might not fully know. Even the ones I know, can I fully do?"

You might have that one person as a friend, a roommate, a neighbor, a course mate, that just most times does not always turn up for meetings, class, outings and is always tired but you don't know why. The reason for this might be an internal struggle like Sickle Cell. Nigeria bears the highest burden of Sickle Cell Disease (SCD) globally. About 150,000 newborns are affected yearly and over 50 million citizens carry the sickle cell trait.

This is what is so disheartening; that the population with the highest burden are the least aware.

This disease weakens the sickle cell warriors especially during a period of crisis-episodes of painful complications and can be hard on both the Warrior and the loved caregiver. Sickle cell disease (SCD) is a hereditary disorder in which the individual has inherited two abnormal Hb genes, at least one of which is responsible for the production of sickle Hb (HbS). There are different types of sickle cell diseases but the most severe and the most common is the HbSS which is the sickle cell anemia. It causes red blood cells to form into a "C" shape — like a crescent moon, or a farm tool called a sickle. These sickled blood cells can stick together and keep oxygen from getting to the individual's tissues and organs. This can cause episodes of pain and life-threatening complications like leg ulcer, anemia, acute chest syndrome, priapism (painful erection), stroke, dactylitis (swelling) and a lot more.

Warriors have described having sickle cell diseases as "having your bones being crushed from inside", “multiple kidney stones at once", "severe toothache multiplied across your body", "your body fighting itself and you're trapped in the pain".

These are just some relatable ways to understand what the Warriors go through and it is all happening inside. The best a country can do is to have regulations or implemented policies protecting sickle cell patients. In 2021, the Nigerian Senate passed the sickle cell bill. Aiming to conquer the problem of sickle cell using the 3-pronged approach of prevention, control and management.

However, there has been a significant gap between the passing of the bill and the implementation. Nigeria still lacks basic amenities. Nigeria lacks widespread early neonatal screening, affordable disease-modifying medications like hydroxyurea, robust primary healthcare integration, and financial protection or subsidies for families very much needed in a country where the majority do not earn much.

Although, according to the Federal Ministry of Information and National Orientation, this year, the Federal government committed to changing the narrative with the 3-pronged approach and emphasis was made on prevention.

However, some NGOs prescribe awareness in addition to the 3-pronged approach.

This could be an awareness scheme, but should not be left at that. Research and advocacy should be included. The question from the beginning is “What do you do when you know about sickle cell?” and the question still stands. We might not know everything about it but we know some, now what do we do about that piece of information?