How To Live With Sickle Cell: Sickle Cell and I

The above is the title of my book that was published in May 2021. I have been blogging and writing about sickle cell for over 6 years. My name is Tola Dehinde. I was diagnosed as having sickle cell as a baby (months old), at Great Ormond Street Hospital. I therefore grew up knowing that I would be the one to fall ill, amongst my siblings, there were four of us in total. For that reason, I grew up knowing that I was ‘delicate’ as a child, as my mother would say.

I came back to London in my early twenties and that was when I really understood what sickle cell was all about. My immediate family were all living out of England. So, I had to be more independent fast. Throughout my life and right till when I came back to London, I was never admitted to hospital. My mother was a nurse and so she always looked after me at home.

In the last 80s, I started work at the BBC in London. It was tough being the only young, black woman who had sickle cell working in an office in White City. Despite it being hard, I worked at the BBC for twenty three years. During my time at the BBC, I studied and got various qualifications, I got a French degree, I got a post-graduate certificate, I got a diploma in life-coaching and I also studied relationship counselling. I have over the years done so many other courses.

Living with sickle cell is challenging because of the unpredictable nature of the disease. It is so difficult to make concrete plans because if one falls ill, and there are other people in the plan, it would seem as if one is letting other people down.

Post BBC, I started blogging on various aspects of my life. I love writing and decided to start three blogs at a go. The first blog was about sickle cell and my life on: www.howtolivewithsicklecell.co.uk. A year after I started blogging, a door opened for me to write a column on a weekly basis on sickle cell matters for the most widely read newspaper in Nigeria called Punch. Incidentally, Nigeria has the highest birth prevalence of sickle cell disease in the world. Suffice to say, I was very happy to put issues about sickle cell on the global map. It has been an amazing experience so far as I get so many emails from readers, all over the world regarding issues about sickle cell.

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