Author: Dr Esther Cole
Genetics
They say the past is in the past, but when I send my saliva to a laboratory overseas, they can tell me my most recent ancestors are from Jamaica – the Windrush generation. The sample tells them my ethnicity is 88% Sub-Saharan West African (Nigerian approx. 59%, Ghanaian, Sierra Leonian, Liberian etc. approx 29%) and 12% White European. My ancestors live in my DNA, and the past – somehow – is in the present.
The saliva also revealed, three years after a kidney biopsy, that I carry two defective APOL1 genes. This variant of the APOL1 gene is more prevalent in people of Sub-Saharan African ancestry, and people living in Sub-Saharan Africa today.
It means we are more prone to suffer from degenerative chronic kidney disease (CKD) – to go on to require dialysis; and need a kidney organ donor to survive. For people of African descent, we have nearly twice the risk of CKD and 3.5 times the risk of end stage kidney failure than our “White” peers (Chen et al 2021).
My kidney function is currently at around 50%. It dipped to 30% in the scorching Caribbean heatwave that caught Britain this Summer. I’m battling with my identity and my DNA (why was I dealt these cards when no one else in my family has?).
Why Me?
However, I have to admit I was dealt some other fantastic cards in this life. I’m an award winning psychologist – twice. I’m the Mum of the three most incredible humans (I am not biased).
The first Black Psychologist to win the Early Career Award from the British Psychological Society (BPS). I’m most likely the first Black Clinical psychologist to write a book on childhood brain injury: “Psychological Therapy for Paediatric Acquired Brain Injury: Innovations for Children, Young People and Families.”
We can’t have everything in this world. It wouldn’t be fair. There are checks and balances. A certain homeostasis to life – ups and downs, ebbs and flows.
Research Trials
I’ve enrolled in a research study – and you can too – looking at “Fighting Non-Diabetic Chronic Kidney Disease” at a London Teaching Hospital. You may get an “inconvenience payment” for your time. That term makes me laugh. Yes, it’s totally inconvenient living with CKD.
Part of this study includes a drug trial (which I’m too scared to do because it’s purely experimental). I have additional monitoring from the hospital, and they’ve put me on an anti-diabetic drug – dapagliflozin – which has good research data showing it seems to stabilise the decline of the kidneys. Sugar is one of the worst, most corrosive substances for our organs; and this drug helps drains the sugar from the system.
Barriers to Organ Donation
I try to put my pain to purpose. Maybe I was sent these genes by a higher power to help others? I always feel a personal traumatic experience has been worthwhile if it turns my pain into purpose for the healing of others.
So many people of African and Caribbean heritage refuse to donate organs, even when death is imminent. Religious and cultural factors, wishing to leave the body “in-tact” at death; and not having conversations about organ donations, means we have a severe shortage of organ donations in the Black community (NHS, 2019).
Decisions about organ donations need to be made by the family within minutes after death, in order for transplantation to be successful. It’s better for us to register as an organ donor when we are alive and well, so the NHS Trust knows our wishes when we die.
We Need to Talk – There Are Solutions
Let it be known by all that if anything is left of me to utilise, I will gladly give it. Heart, cataracts, liver, lungs. I won’t need it, it’s fine. Give it all away.
When we have these discussions morbid humour turns to laughter, and maybe tears of laughter, but it’s a pragmatic and important conversation to have. One that saves lives.
And what if your kidney or liver isn’t a match for your loved one? Fortunately, there are growing numbers of “altruistic donors” – that is, people giving their organs to those waiting on the register, without a connection to them, or a prior relationship.
There’s also a scheme on the NHS called “Kidney Paired Donation” or “Paired Exchange”. This is where, if your organ is not a match for your loved one; you can be matched with another couple whose organ doesn’t match, and donate to each other’s loved ones instead!
In the very diverse “Black”
community, we need more of these conversations about hereditary disease and organ donation. We need to find ways and means to express our wishes for organ donation before we pass away.
Religion and Organ Donation: The Miracle of Science
Waiting on a 2-3 year register for organ donation, it’s impossible to know if you have a future, or will ever live an “ordinary” life again. I’m a Christian, and I have been raised to believe in a God and an afterlife. I don’t think this world is all there is, but on this Earth I want to be as pragmatic as possible.
We do need to respect people’s cultural and religious beliefs, but safe in the knowledge that everyone has been given an opportunity to ask questions, receive education and training and to find out more about organ donation, before they rule it out.
Read the NHS (2017) guide to “Organ Donation and Religious Beliefs”, (www.organdonation.nhs.uk) which, shows the teachings within multiple faiths, across the globe, are largely in favour of the organ donation process.
For example, something miraculous happened in London last week – a miracle of God and science. A girl aged 8, Aditi Shankar, was the recipient of her Mum’s kidney. For the first time in medical history she was able to have a drug-free transplant, not requiring dozens of immunosuppressive pills, due to the stem cells from her mother being used to reprogram her body not to reject it.
By the time you, I, or your love ones needs a transplant, isn’t it fascinating to think how many more miracles of medical science there will be? Our bodies alone, in my opinion, being living, breathing evidence of a daily miracle of what it takes to be human.
Read our sister article: 12 tips on how to thrive as a working parent living with chronic illness
References
Chen, Coresh, Daya et al (2021). Race, APOL1 Risk Variants, and Clinical Outcomes among Older Adults: The ARIC Study. J Am Geriatr Soc. 2021 Jan; 69(1): 155–163.
NHS (2017). Organ Donation and Religious Beliefs: An Overview. Leaflet. Www.organdonation.nhs.uk
NHS (2019). More black, Asian and minority ethnic people are becoming organ donors, but shortage remains critical. https://www.organdonation.nhs.uk/get-involved/news/more-bame-people-are-becoming-organ-donors-but-shortage-remains-critical/ Retrieved 20th Sept 2023.