Sickle Cell Warrier

Mohamed-Bachir, Niger English


My name is  Mohamed-Bachir.
I am 37 years old and I was born in Niamey, Niger in West Africa. At two months old, I was a chubby baby and was  my parent’s joy because I was their first child. But at 4 months, I became whiny. I did not look well and I was gaining a lot of weight.
At the hospital my mother was told that in reality I was not gaining weight because I was well fed but that I was swelling, and actually puffy because of the pain. They told her I was suffering from  the severe form of Sickle Cell anemia (SS).
I had the pain disease as they call it.

That is  when  the fight to save my life  began for my parents and  especially my maternal grandmother who sacrificed all her life and happiness in order for me to  live.  This disease is little known and poorly managed in my country. People told my grandmother that I was going to die soon. I had a very strict  diet: I was not allowed to eat salt, oil, or sugar…
I only drank  leaves decoctions and roots from various plants. I knew all the hospitals in the  city because I stayed  regularly in all of them. I toured the majority of private clinics and traditional healers in Niamey, Togo and   Benin, neighbouring countries. I drank and ate unimaginable things. At the age of 7, I had a square of a hundred scarifications on the back and chest done by a traditional healer. He then added a blood purifying powder.
My parents and my grandmother were really determined to do anything to save my life! The older I got,  more people told  them to give up because  this child will soon die

But my grandmother was a fighter and she never gave up. She treated me  using modern medicine because she was a nurse and a midwife, but she also did not rule out traditional care. She gave me tips to better manage the pain during my crisis. She was determined to make me live as long as possible.

I did not have a  normal childhood, nor do I have a normal life. I spent most of the time in the hospital and very often missed classes. I had to be careful with everything because it is not easy to live  with this “invisible handicap”.

I am a walking  miracle because in 2018, I had a necrosis in my members. I underwent two surgeries in France because  it was not possible to have it in my country. Currently, I have a prosthesis  a shoulder and one on  the femoral head. Pain has always been part of my life!

I am convinced that this disease has made me stronger and more determined to live my life. I’m still fighting.
Today, I am married and proud  father of a wonderful little girl,  who has Sickle Cell traits  and I am a manager   of  two companies.

The best gift I can give is to talk about this disease. Because who else  can explain it better than the  people who live with  it?

I am  convinced that to raise awareness about the disease and also to live  the best wr can  with it, we must talk about it.
So, today, I am sharing my life experience with sickle cell disease in order to advance the cause.