SICKLE CELL AND ME

My name is Tola Dehinde and as someone born with the Sickle Cell genes, (HBSS), I know a great deal about the disease.  I know a lot about being in and out of hospital, and I also know about helping myself stay out of hospital now that I am much older.  Sincerely speaking, it’s not been an easy road or shall I say life but all in all, I am proud of my achievements. 

I am sure if you are someone diagnosed with Sickle Cell at a young age, you don’t or didn’t think you will live long because you were most probably told that your life expectancy would be short.  Unfortunately, that has been the case for so many sicklers over the years.  For us who are alive, I want to encourage you that life is worth living with Sickle Cell, painful as it might be.  It’s not an easy road, as one cannot do what other people do, without falling sick sometimes.

I would like to shout out to all the mothers, husbands, wives and siblings looking after a child, a partner or sibling/s who has Sickle Cell.  It is so vital to have good care if you are unable to care for yourself because of Sickle Cell.  Looking after yourself or having someone look after you or care for you is so important in the life of someone with Sickle Cell.  Mothers who care for their child or children from the moment they were diagnosed with Sickle Cell do an incredible job, as well as fathers.  I remember my mum would ‘force’ me to eat what is ‘good for me’; the fact that my mum was a nurse also helped.  Fast forward to now, five decades down the line, I have become a fussy and picky eater, thanks mum!

The stigma with Sickle Cell in our continent really is inexcusable.  Sickle Cell is not HIV/Aids and even those people with HIV no longer have a death sentence.  So why are people in the 21^st century discriminating against someone with Sickle Cell?  It’s totally out of order and unfair.  We can do better and embrace diversity, as that is what makes the world a wonderful place. 

I am all for eating well and eating good food that is nutritious and will help me stay out of hospital.  And also I am all for eating food that will help the sickle shaped blood cells in my body not clot, so that I am in pain at home, only if it is a mini crisis that is.  Truthfully, sometimes despite my best efforts, I still fall ill and do end up in hospital.  C’est la vie – that’s life.

If you suffer or know someone who suffers from Sickle Cell, then you know to look after yourself, keep warm, don’t over stretch yourself, don’t get too excited, eat well and drink plenty of fluid, preferably water, in order to keep your blood cells moving and not clot.  Most importantly, try and walk away from stress, Sickle Cellers cannot handle too much stress and also if you are feeling tired, give yourself the rest that your body needs.

I remember when I was little, and my mum was preparing a birthday party for me, the excitement of all the preparation would make me fall ill a few hours before the party; oh dear!  I remember being at work and one minute, I am ok and the next I am having a crisis and it can seem to someone who does not know about Sickle Cell, that I am lying. 

A little bit more about me, I have worked in the media industry for over twenty years and worked for the best media company in the world, the BBC.  Of course, I would fall ill from time to time but never once thought not to work and stay at home because of Sickle Cell.

I have made sure that Sickle Cell does not define me but I define Sickle Cell.   By that I mean people find it hard to believe that I have Sickle Cell, until I fall ill, in a very ugly way.  People with Sickle Cell, you know what I am talking about or if you know someone close to you with Sickle Cell, then you know too.

Let’s live as best as we can.