Imagine what it’s like being told you have a higher chance of suddenly developing a rare, rapidly worsening brain disorder that could kill you within a year.
For the last four decades, this has been my reality – and words can’t describe how frightening that is.
Now I could get Alzheimer’s disease on top of that too, after finding out that people who received growth hormones as children may have caught it from human-to-human transmission.
It all started at the age of 10 when doctors were concerned that I had stopped growing two years earlier. I was recommended Human Growth Hormone (hGH) injections – which were approved at the time to encourage growth – so my mother started administering them to me three times a week.
Every Monday, Wednesday and Friday after tea time, she’d give me the injection in alternating cheeks of my backside.
We did this for 10 years and it ended up controlling my life. I couldn’t go on any school holidays or socialise with my friends because I needed to be home. I hated it.
To make matters worse, routinely injecting in the same spot caused the skin on my backside to harden like wood. In fact, needles would bend or break while they were in my skin and would have to be pulled out with a pair of pliers, which was incredibly painful.
Just before my 21st birthday, doctors were happy with my progress so said I could stop. This was a huge relief as it felt like I could finally have my life back.
By this stage, I estimate that I was injected 1,560 times in total.
Things carried on as normal until I was in my 30s and I received a letter in 1985 telling me to see the doctor who had prescribed and oversaw the injections. This is when I was told that I could develop Creutzfeldt-Jakob disease (CJD), which I had no idea about at the time.
It causes brain damage that worsens rapidly over time. He told me that someone else who had been given hGH injections had gone on to die from CJD, as some of the batches had been infected with it.
I could develop it at any time so I needed to routinely test for the rest of my life.
I was devastated, but what followed was the hardest conversation I’ve ever had with my mother. I hold absolutely no ill feelings towards her because she was just following the advice of doctors.
In the years since, I got compensation from the Government, but it was pitiful.
Sadly, mum passed away recently but this discovery ruined our lives. Two of my marriages over the years fell apart while I struggled with depression, unemployment and low self-esteem – and I even attempted to take my own life.
Ever since that discovery, I’ve had annual blood tests and lumbar punctures at the National Prion Clinic at UCL in London, the latter of which involves a needle being inserted into your lower back to test spinal fluids. It’s to ensure I’m alright, but it’s also for medical research.
It was during one of these routine visits that I became part of a new study that looked at whether there’s a link between hGH injections and early onset Alzheimer’s disease – the results of which were published earlier this week.
Researchers reviewed eight cases where people received batches of donated human growth hormones as children. Of these eight, seven reported cognitive issues in their 40s and 50s – with three actually diagnosed with Alzheimer’s disease and two meeting the diagnostic criteria for the condition.
On top of that, researchers analysed the DNA of five of the recipients – the only ones with samples available – and found that none had a heightened genetic risk of Alzheimer’s, suggesting that their symptoms weren’t inherited.
As soon as I read these results – a few weeks ago, because I had confidential advance access – I was transported right back to how I felt in 1985 when I found out about my risk of developing CJD.
It truly feels like the sword of Damocles above me.
I already had anxiety and depression every single day, but now it’s even worse. There’s a constant ‘what if’ in the back of my mind and it often feels all-consuming.
So whenever I go for my routine CJD check ups, I’ll also have to monitor for symptoms of Alzheimer’s disease.
I don’t have a family history of dementia, so it’s scary to think that – if the worst happens and I get that diagnosis – it could’ve been because of injections doctors advised me to have in my youth.
The reason I’m sharing my story is because there are an estimated 2,000 people who went through the same hGH injections I did, but they’re not all accounted for.
Some have come forward but there could be others who have no idea they have these increased risks – or parents who didn’t even disclose they had it done to their children.
Some days are really hard for me to deal with what feels like a ticking time bomb. So I lean on others for support, like CJD Support Network, which I call whenever I have wobbles with my mental health or I’m worried about particular symptoms.
Their help has been invaluable so if you’re reading this and wondering if you might have been affected or you know you have been, please consider reaching out to them for support.
Take it from me – it’s not easy having this potential life-threatening condition hanging over you.
I’m in my late 50s now and I try to just take one day at a time. Tomorrow is another day – and each new one I get to live, I’m grateful for.
But it should never have happened to people like me in the first place. I’ll live the rest of my life with this pain.
As told to James Besanvalle.
You can email the CJD Support Network at support@cjdsupport.co.uk or call their free helpline on 0800 774 7317.
Do you have a story you’d like to share? Get in touch by emailing James.Besanvalle@metro.co.uk.
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