Hi there my name is Kehinde Salami I am 37 years old and I have sickle cell disease which is the world’s largest genetic blood disorder. I never knew I had sickle cell disease myself until my early 20’s when I was diagnosed at my University in Manchester where I woke up one day in intense pain and had to be carried to the nearest medical centre where originally they thought that I had a rare stomach cancer, I was then given blood tests a week later to know that I then had sickle cell disease.
Despite being an adult with the condition I have been faced with many hurdles in regards to lack of awareness, ignorance and support with the condition
I can recall a very traumatic experience I had in employment which was working for one of the very big energy companies where I fully disclosed my condition including doctors and occupational health reports.
I worked there for three years, only for the third year to fall ill and for my managers to doubt my claims of being sick and often times I had to physically walk into work to hand in my sick note because they refused to accept posted copies. Never the less due to pressure I often worked through the pain and bouts of sickness before I was well again which left a repeating cycle of sickness and absence. This led to them eventually terminating my contract, I then appealed and had to take them to court, which was a daunting task for me as I was representing myself in court against a vast energy company who had their corporate lawyers only for me to lose on the technicality that I submitted my Electronic Tribunal Form (ET) form late due to incorrect advice from my union rep who coincidently worked for the Company himself.
Moreover, this lack of support continued through various working environments that I have had leading to increased stress due to ongoing lack of support and awareness and understanding of the condition from various employers.
How I created my charity named Sicklekan?
Just over three years ago I suffered from 5 major back to back sickle cell crisis episodes. Three almost killed me as I suffered from acute chest syndrome, intense stomach pain, and restricted air flow to total blindness in my left eye for about a year.
During this bout of prolonged ill health I was unable to work, faced with piling bills and fell into bouts of depression as I had no support system in place, my life would be hospital admissions, discharge, recovery at home and repeat added to the fact that I now was blind in my left eye there was nothing at all provided by the community to help me recover physically or mentally, so I regressed and channelled my anger towards myself and shut myself off from everybody for about 6 months I was in total isolation.
One day I decided enough was enough, if I carried on the way I was going, I would have become eventually another statistic, another sickle cell patient dead due to the silent disorder.
I realised that as a man with sickle cell disease it was tough to find a support network so thought to myself why not create my own and that is where Sicklekan was conceived. I started just by doing Instagram and twitter posts then moved to facebook, then eventually created a website as I started getting more and more attraction from sickle cell patients around the world. During the past three years myself and the Sicklekan charity were able to do work with, the BBC, London live, NHS England, NHS BST, Various Radio Stations, Schools, Colleges, Trips to Parliament where we were able to be a part of key decision making policies as part of the BAME blood, organ and stem cell donor review as well as various projects within the community. I am fortunate to have been blessed with such a fantastic opportunity to help raise awareness and help support those within the community affected by sickle cell disease. However in 2018 there are so many areas where support is so very lacking and hopefully our voices can be a major catalyst for change for the sickle cell community.
Please CLICK HERE if you would like to donate blood to help sickle cell patients like Kehinde
