Sickle Life- Review. 

​Republished with permission of Daniel Nyakutsey. This article was first published by Daniel Nyakutsey via www. on December 26, 2016.

I visit Ghana when I can to at the very least enjoy the sun, sea, the tasty food and as a reality check for myself. On my most recent trip, I had the honour of speaking to Dr Enam Sefakor Bankas, the founder of Sickle Life, a fantastic project in Ghana, educating people about sickle cell and encouraging them to get tested. I have been following Dr Bankas and Sickle Life on social media for some time so I do know that Sickle Life is doing some excellent work in Ghana; generating a lot of awareness and hopefully breaking down barriers around sickle cell and the stigma that goes with it. In my conversation with Dr Bankas, one thing that stood out for me was attitudes towards sickle cell disease from the very highest of places. This brilliant doctor who is sickle herself and obviously has first-hand experience with the challenges of this disease finds herself almost alone with only a small dedicated group of volunteers. They work hard, they work tirelessly and with no financial support from anyone it appears but they still get a lot done on pennies.

Get this, Hydroxyurea, which is available to sickle cell patients on the National Health Service in UK irrespective of its cost, is only accessible by relatively wealthy sickle cell patients in Ghana. This is a country where 1 in 4 carries sickle cell genes and 15000 children are born each year with sickle cell disease. It shocked me to my core to be told that only the wealthy get the benefits of Hydroxyurea simply because they can afford it. Pay as you go health care system at its best, one might say. Majority of Sickle patients of course are desperately poor so for them, the future is bleak. It sounds so wrong but it appears sickle cell patients in the developed world and what they get for healthcare could be regarded as luxurious compared to what’s available in the third world. 

Ghana spends huge sums of money on nonsensical projects like an airport in the Volta Region of Ghana all in the name of infrastructure development and yet the health and wellbeing of a quarter of the population who happen to carry this uniquely deadly haemoglobin type does not feature anywhere close enough to the priorities the most important actors in this country worry about. I find this sad, depressing and irresponsible. “Ghana for you”, I’m always told. Nothing happens. Nothing would ever happen because that’s just the way it is, in other words. 

What can anyone do about such a dire situation? Sickle Life are certainly doing a grand job in my view but they need a lot of funding and support. The big guys at Ministry of Health need to recognise that sickle cell is a serious issue that needs their unwavering attention and the commitment of funds. A lot can be learnt from the experience of developed countries in terms of how they have approached sickle cell. But much more needs to be done in Ghana beyond just learning of lessons. A quarter of the population is walking around carrying the genes that causes sickle cell disease so it won’t be enough just to learn the lessons of the developed world and then do nothing. Anyone who knows anything about sickle cell disease knows that this is not a problem that would go away if there is no strategy to deal with it from the ground up. Sickle Life is doing exactly that but they cannot do it alone. They certainly cannot do it without funds and many more volunteers. 

Sickle Cell Disease is not some sort of curse inflicted by witchcraft or black magic as some people think. It is not a divine generational curse either but it sure would be around for generations to come if something is not done about it. We Africans need to stop looking down on sickle cell patients and stop treating them like societal rejects because they are not. They are real people like the rest of us. The sickle gene is a lot closer to home than we all realise. If we all talked openly enough about sickle cell, we would realise that we all know someone dear to us who is living with sickle cell and against all odds, is achieving big things and making a real difference, just like these very special individuals at Sickle Life. Wonderful people such as Dr Enam Sefakor Bankas and her small team of volunteers need our help and they need money. Let’s support her and Sickle Life so that they can continue to make a difference. 

Ultimately it is down to all of us to take responsibility for our lives and get tested. Yes, it would cost money to get tested but that could well be the most important investment we all make with regards to our health and wellbeing because sickle cell is a highly individual condition and its impact on all sufferers is a little different from person to person, but it is costly and can be devastating regardless. My message to everyone reading this is that don’t sit on the fence thinking it has nothing to do with you. Too often, I hear people say things like “it is not my portion” or “God forbid” etc. Information available to us at this point indicates that every 1 in 4 Ghanaian carries the sickle gene. Yes, every fourth person you’ve just counted, including you. Are you going to risk being the one who produces a child who is sickle? Do you really want to live with that guilt knowing that your child would live with unimaginable pain and uncertainty their whole life? Sickle Cell Disease would challenge you beyond anything you can imagine. I have seen the strongest of people break down in despair due to sickle cell disease. If we are going to be odd to our peers at least let’s be odd for the right reasons. Find the money you need for the test. If it takes you months to save up for it, at least you would go through the rest of your life knowing you did the right thing. You would have done the right thing for yourself, your community, people you love and for the love of mother Ghana.

Sickle Life- Review. 

Daniel Nyakutsey.

(The writer is the founder of UK based Sickle Cell disease advocacy, Sickle Cell Welfare Forum which seeks to discuss and share ideas about everything Sickle. It encourages everyone to make their voice heard and change policy towards Sickle Cell.) 

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