I was diagnosed with sickle cell disease when I was a small child and always suffered badly from as far back as I can remember; physically, mentally and emotionally. This began right from primary school, ranging from being forced to wet myself because teachers would refuse to let me use the toilet, to being branded a liar because the effects of Sickle Cell are not visible. Teachers would often have discussions outside of the classroom that would make their way into the classroom having great impact on my confidence in speaking out. One teacher would tell another that I was a liar and that teacher would say they’ve spoken to Mr or Miss X and they don’t believe me which filtered down to my peers and equated to me being victimised by my teachers and peers alike. This snowballed to the point I had to literally walk with a note from Doctors explaining why I needed to regularly use the toilet and without this I would often be refused.
Over the years my Sickle Cell continued to affect me in a bigger way meaning I would often miss out on much of school, college, and university. A lot of these institutions didn’t understand or know anything about Sickle Cell and rather than learn, they found it easier to exclude me, often causing me to fall behind massively because of their lack of understanding. This followed me into adult life, often being dismissed from places of work directly as a result of my absence because of Sickle Cell. This was always very disheartening, having to explain what Sickle Cell Disease is everywhere I went. This put me at a disadvantage in every place of work to date. If I had to explain to them what my illness was in the first place, then how much more when it actually affected my ability to attend work.
The general uphill struggle with Sickle Cell has continued throughout my life. The most difficult part of it being the fact that all of the suffering is internal. This has made it very difficult over the years to help people understand what exactly is happening. This is made worse when you have to convince health professionals just as much as you do anybody else.
When I was 21 I suffered a chest crisis and pneumonia which resulted in hospitalisation for two and a half months. I was intubated, in a coma for 3 days and my family were told to say goodbye to me as they had done all they could but explained that my death was inevitable. Thanks to a lifesaving exchange transfusion and the quick thinking of a Senior Specialist Sickle Cell Nurse in Croydon, I’m still here to share my story and the lifesaving importance of giving blood.
Please CLICK HERE if you would like to read about blood donation and would like to donate blood to help sickle cell patients like Emmanuel..