I was given injections as a child – there’s a good chance they’ll kill me

It was only years later that we discovered that they were possibly infected with Creutzfeldt-Jakob disease (CJD) – a rare, invariably fatal neurodegenerative disease.

There isn’t a cure.

Today, aged 57, I’m still fighting for answers about what happened to me. Still fighting to find out whether I have CJD, and if it’ll cost me my life.

Growing up, I struggled with my height and had very few friends. I stopped growing when I was eight, and I was bullied for being the smallest person in school. It felt like the world was against me.

Aged 10, after seeking advice from our doctor, I was recommended hGH injections – then approved for treating children of unknown poor growth. My mum administered them into my buttocks three times a week, and my entire life revolved around them.

I couldn’t be a normal child, go on school trips or out with my friends as I always had to be back for my injections. After tea, mum would make her way to the fridge to grab the familiar vial.

Until 21, I estimate that I was injected 1,560 times. So much so that the skin on my buttocks became rock hard, and sometimes needles snapped or got stuck.

I hated it, but my mum felt like she had no choice. I don’t resent her for it, even now, she was acting on medical advice for my sake.

In my thirties, I received a letter from Leeds General Hospital requesting that I make urgent contact with the professor who’d monitored me.

I was pleased to see him, but for the first time, he looked very upset. ‘What’s going on?’ I asked – he said that I was at risk of CJD because of the injections. I had no idea what CJD was at the time.

Its human equivalent was called variant Creutzfeldt-Jakob disease (CJD) and in 1994, the first cases of the neurological disease was reported in humans.

Whereas variant CJD was caused by the consumption of BSE-contaminated meat, the form of CJD that concerned me was related to infected hormone injections.

I was one of around 2,000 people in the UK who received hGH between 1959 and 1985, some of the batches of which were infected with CJD.

But there was little chance of knowing if I actually had it. I got told, and my doctors were notified, but I didn’t get any support in terms of figuring out the next steps.

The crisis was all over the news and the local press got a tip about me – hounding my mum and I, even the police were called.

Even though we never gave an interview, the papers still wrote about us. And word spread like wildfire.

I took signs down from newsagents, and once good friends and neighbours now crossed the road to avoid us. Thinking they could catch it.

Even now, it happens. When I go to the pub in my local village, people move away from me. Thinking I’m infectious.

I got compensation from the government years later, but it was pitiful. It didn’t get me any closer to the truth, or helped me understand what happened to me – and whether I am living with a potentially fatal disease or not.

Sadly, mum passed away four years ago 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.

A year after my mum passed away, I decided to get closure – for both me and her.

Between my first injections and 1981, I’d received growth hormone from batches potentially infected with CJD – around 780 possibly infected doses.

I discovered that human pituitary growth hormones were extracted from deceased people for the injections, some of whom had died with CJD.

This is called iatrogenic CJD, and one of four variations of the disease – the others being variant (when it’s contracted after eating infected meat), genetic and sporadic.

Symptoms of CJD include changes in personality, loss of coordination and vision, slurred speech, abnormal jerking movements and progressive loss of both intellect and mobility.

Now, I have tests each year to check for CJD, and I’ve since had a lumbar puncture and my spinal fluid taken for testing – so far it’s come back negative.

I’m part of a research project looking for early markers of disease in those at risk see if collecting information collecting data on people like me that can be used to help other people. I feel so proud.

I’m half expecting to be diagnosed with CJD, though doctors tell me I have ‘dodged a bullet’ so far. I’ve learned to get on with my life, but there is a ‘what if’ factor.

I’m trying to embrace being dealt a bad card by talking freely about my story. To erase the stigma of CJD and ‘mad cow disease’ – to prove to people that you can’t catch it from sitting next to me at the pub.

I want to see more attention on CJD and funding going into research to develop and test drugs for CJD so that effective treatments can one day be available for people who need them.

My son, Jack, and I are also doing the Dales Way Walk this August with our dogs Mable and Beryl – my lovely mum’s name – to raise money for The CJD Support Network charity.

I get up every morning and I am grateful to remember yesterday – that’s how I live.

Right now, that’s all I want.