“We are being called witches, liars, drug addicts, skivers and many other terrible terms. And all this by our own families, friends, the medical and teaching staff… SCD (Sickle cell disease*), that disease that causes me so much suffering and pain. It is invisible and only my scars are there to bear witness to this. I learned to accept them and make them my strength. And through social media, I’ve finally been able to set me free, talking about it, showing my difference but also seeing the of others and feel less lonely. SCD is the first genetic disease in France but we are still ignored by the media. That’s why social media’s were for me a first gate, in order to make my fight heard. I am now in total harmony with my body, but deplore the fact that this disease is under-publicized, even on the International Day dedicated to it. Not a single word, photo, testimony on the biggest channels. I will keep on fighting!
When I think back to this journey I have been through and where I stand now, I am so happy. I had an meeting with a doctoral student and he asked me the following question: How I experienced my transition from childhood to adulthood with the disease.
Apart from the medical side which was a pure nightmare and I am still traumatized until today, I answered him:
“I was happy, I was in heaven and this because: I COULD WALK! Yes I was walking! On my own two feet. For some it may seem insignifiant but I guarantee you that after spending all my adolescence in a wheelchair, all high school long in a wheelchair, 4 years! The mere fact of walking, I was the happiest in the world! Crisis or no crisis I didn’t care! I felt like I was coming back to life! I had recovered a part of myself, a part that had brutally been taken away by m SCD! Today I still have aftereffects on my body, but I am proud I never gave up, I fought ‘til the end!” "
*Sickle cell disease is a group of disorders that affects hemoglobin , the molecule in red blood cells that delivers oxygen to cells throughout the body. People with this disease have atypical hemoglobin molecules called hemoglobin S, which can distort red blood cells into a sickle , or crescent, shape.