Inspired by the courage and spirit of our late friend Gifty, we setup The Gifty Foundation to address a problem: lack of understanding about Sickle Cell in Ghana.
I’m Tom, and Gifty was my wife. We met almost 20 years ago when I was 19 and she was 23 in Accra, Ghana - I was visiting family. The first time I saw her, I was sitting on the porch of this very house. In fact I took the photo just a few days later.
With the help of my friend Cudjoe, I asked her out. Actually he asked her out on my behalf, and unexpectedly we fell in love. As luck would have it, Gifty actually lived in London at the time, and I was due to move there from Liverpool when I got back to the UK.
Before we started dating someone told me she had “sickle cell”. I had no idea what that meant but I was young and didn’t really care. I later found out as I witnessed the most painful sight one could imagine. A sickle cell crisis is something akin to torture, a painful episode where the body is starved of oxygen.
The complications of Sickle Cell Disease, organ damage and an unidentified infection overcame Gifty in 2007. It was the worst day of my life. I knew it would come, but I didn’t think it would be so soon.
Sickle Cell Disease is a condition which can be managed when the sufferer is empowered, eats well, avoids stress and has access to good healthcare. When she was born, her parents lacked the information and knowledge, and for a large part of her life Gifty did not manage her condition successfully.
Some of you reading this knew Gifty, and you’ll know what an inspiration she still is. Her fierce determination to live was driven by her desire to help her family.
A quarter of the Ghanaian population carry the sickle-cell gene and very few are even know what that means. The effect on individuals, families and the economy is significant.
More than 35 years later, things have improved marginally, and in some sections of society, but another generation of Ghanaians will suffer the consequences if this issue isn’t tackled swiftly.
Gifty's belief in the future, her zeal, and her determination have left us with a duty to make a big change.
With a great deal of help, we’re going to do just that.
Sickle Cell Disease is one of the biggest health problems in Ghana. The World Health Organisation estimates that over 20% of Ghanaians carry the Sickle Cell trait. Like other recessive genetic disorders, it takes two parents to carry the gene for a child to be born with the disease. The result is an estimate 2% of all children being born with Sickle Cell Disease. In a some countries these children would be tested at birth, but the newborn screening programme in Ghana is nascent. That means the majority die, while parents suffer and are left to assume the cause.
There are significant efforts underway, by organisations such as the Sickle Cell Foundation of Ghana, to provide better testing and care. As a group of non-medics, mostly from the entertainment and technology worlds, we identified an area we could make a difference: awareness and decision making.
With so few Ghanaians understanding Sickle Cell, and, we believe, the majority being unaware of their genotype, our mission is to put in place the means to ensure all young Ghanaians understand the condition and are aware of their own genetic status.
It will not happen fast, but we are using empirical data combined with influence and publicity to make Sickle Cell a national topic; to put pressure on each Minister of Health, to get famous celebrities to spread the word, and to ultimately make sure that nobody walks into reproductive decisions without understanding the implications.
By 2020 we want the majority of 16-15 year old Ghanaians to know their Sickle Cell status.
Our Activity So Far
- 2012 - Established UK charity and raised funds from friends and family
- 2013 - A detailed qualitative survey in Ghana with URIKA research, among 7 groups of young Ghanaians 16-25 in Accra, Tamale, Kumasi, Takoradi. Draft report (written for internal use) is available for download here.
- 2014 - Pilot test designed for implementation when funds are available (approx £20,000). Draft available for download here.
- 2015 - Social campaign launched using research data to identify common myths. Paid Facebook ads reached 307,000 Ghanaians globally, generating 5233 engagements (comments, likes and shares)
- 2016 - A decision to pause the project due to other commitments in the team, and issues engaging with the Ministry of Health (now no longer in office)
- 2017 - Awareness survey launched to assess current awareness levels using web-based quiz (in progress) - to be used in PR campaign, argument to government and fundraising.