Hi there, my name is Dave and I am one of the recipients of human growth hormone (HgH) injections which were potentially infected with CJD. I am writing this, for the CJDSN, to share some words about my life and where I’m at now. What you will read includes good and bad. I ask that you bear with me while I tell you about my life and how the injections have ruled it for so long, as well as how there are still reasons to be happy.
I’d like to start when I wasn’t even a twinkle in my mother’s eye. My parents married in a Lythe village near Whitby, and then settled in Whitby town. They struggled to conceive and adopted a baby boy and, later, a baby girl to complete their family. Another three years later, to everyone’s surprise, my mum became pregnant with me and during the pregnancy my dad took a job in West Yorkshire. Despite mum being ill with toxaemia, I was delivered safely by caesarean section at a whopping 10lb 12oz and we were both discharged, coming home to the house provided by dad’s work.
As a child, I had difficulties with my adopted siblings, I can’t count the number of times I ran away. I understand now that issues can arise between adopted and biological children. As children often do, I thought the way things were was normal. However, my early experiences have had a long-standing impact on my confidence and self-esteem. I never opened up to my parents about any of it.
As I started primary school, my mum became aware of a lack of progress in my growth and approached the local doctor. At around 8 years old, I was sent to Great Ormond Street in London and had many tests. After initial, unsuccessful, treatment for thyroid problems, I went back for a second appointment at 11 years old. This is when it all started. HgH injections in my buttocks, three times a week. Initially, I attended the local doctor’s surgery for the injections, then my mother – an auxiliary nurse – began administering them.
The injections took over our lives. Holidays, days out, and playing out late were all impacted as the injections were after tea time. That was the routine – tea and then mum would go to the fridge, adding the right amount of hormone and purified water from glass vials to a syringe. I couldn’t watch, and I hate needles to this day. I loved weekends, which brought freedom from the injections and gave my buttocks a rest, but Mondays came around quickly!
The injections continued into my teens. I was bullied because of my stature and the treatments I was receiving, which worsened my lack of confidence. I found it embarrassing to have my mum giving me an injection into my buttocks as a teenager. These years seemed to be the worst of my life. The skin on my buttocks was so hard, yet so tender, from the injections. There were times my mum struggled to pierce the skin, even bending and breaking one or two needles that had to be pulled out with pliers. Sometimes I would run away and my dad would be sent out to find and bring me home, it was very upsetting for all of us.
It was my mum who was concerned about my growth, my dad said all along ‘just leave him alone, leave it be, it will sort itself out. Don’t mess with him, it’s asking for trouble!’ and he was probably right, but I don’t blame my parents for giving me the injections.
Every 3 months, my progress was checked by a Professor at Leeds General Infirmary. Finally, when I was 20 years old, he gave me the news I had always wanted ‘You’ve made enough progress, you’ve finished with the injections at last!’. By this time, I had received around 1,560 injections. I was so relieved.
Just 9 days before my 21st birthday, I found my father in bed having passed away in his sleep. This was my first experience of bereavement and it was particularly difficult as mum was on holiday and I was on my own. I struggled with different emotions, even feeling angry with my dad, as he never got to see me turn 21 – why didn’t he wait?!
It was me and mum now, as my siblings had long since flown the nest. Within 18 months of losing my father, my uncle and my favourite auntie also passed away. As well as being a lovely auntie, she was my mum’s best friend. It was a major blow for all of us. I was still living with mum and tried my best to look after her, but I didn’t know how to make her feel better and happy again! She was just devastated and it took time for her to overcome the worst of it, but we got there.
My mum was a Methodist and always saw the best in people. She was a constant support for me but, because I lacked confidence, I thought I wasn’t good enough to hold down a job. Despite this, I gained employment as a butcher for 4 years before attending college and getting three good qualifications in landscape gardening. I started my own business, something I’m still doing 25 years later.
In my 30s I received a letter from Leeds General Hospital requesting that I make urgent contact with the Professor who had monitored my progress on the injections. I was pleased to see him and my nurse, but for the first time over the ten years I’d known them, they looked very upset. ‘What’s going on?’ I asked – they told me that I was at possible risk of CJD because of the injections. My whole life was turned upside down; it had a huge impact on me and my first marriage broke down as a result.
A short time after this, the BSE outbreak happened and was all over the news. The local media got a tip about me and they bombarded both me and my mum. They hounded us at our home and wouldn’t leave us alone. Even though we never gave an interview, the papers still wrote about us. The notice boards outside nearly every newsagents within a 10-mile radius read ‘Mother injected own son with lethal injection’. It destroyed us.
I wanted to protect my mum, even more than myself, and so I got in the car and spent hours taking down every notice I could. I was confronted by shop owners and I explained what I was doing, some understood and some didn’t, but I took the headlines down anyway!
The whole ordeal affected both myself and mum and we slipped into depression. We were really struggling. Embarrassed, angry, disgraced, and I even felt dirty. Some people in the village crossed the road rather than walking past me. We tried to contact the media writing these things, but they didn’t reply. My life spiralled downhill and I went to some very dark places, mentally. Those were really bad times and I thought the whole world was against me. There was even a time when my mum told me she thought she’d lost me forever, causing me to see my life from a different perspective, and from then I tried to get on in life, which I believe I have done. I was always there for mum and we thought the world of each other, we were very close.
The years went on and we had many happy times. My mum retired at around 60 and kept herself busy, going on holidays with friends, making wedding cakes and helping at the village Methodist church. For a while, I decided to give up landscaping – fed up with trying to make a living like this in British weather! I trained in computer aided design and gained a job with Yorkshire Electricity, doing well even though I had no clue about office life to begin with. At this time, I married for a second time and we had a baby boy. My mum had a real soft spot for my son, Jack, and he and I have been best buddies throughout his life.
I enjoyed life with my little family until, when Jack was around 14, my second marriage ended. I moved back in with my mum for a while and saw Jack regularly. Eventually, it was agreed that he would come and live with me. I met my current partner, Jo, and left my mum’s house to move in with she and her parents. They had a large house and agreed that we could live with my son on the top floor which had everything we needed.
Jack did well at school and, through hard work at aviation college, making connections at a local flight school where he had a job in the café, and some financial support from my mum, has gone from passing his Private Pilot’s Licence (PPL) in 2018 to becoming a fully qualified commercial pilot, flying executive around Europe. Through his training, Jack and I spent many a trip flying around the UK with our cocker spaniel, Mable. Visiting places from the Isle of Mull to the Isle of Wight, camping under the wings of the plane and watching the stars. None of this would have been possible without financial support from the inheritance left by my mum, who was taken ill and passed away shortly after Jack passed his PPL. She never got to fly with her grandson but I know that she is so proud of him, as I am.
After losing mum, I wanted to get answers about the injections for myself, my family, and for her. In 2019 asked my doctor if she could get in touch with Great Ormond Street. Many of the records regarding my injections had disappeared, but she did speak to the Professor who reviewed me all those years ago. He advised her about the Prion Clinic in Cleveland Street. An appointment was made and Jo and I went down to London. I was very anxious.
We saw Professor Rudge who told me everything he knew, answering my questions as best he could. I gave consent to search my medical records and he discovered that I had received growth hormone from human donors until 1986 when I began receiving synthetic growth hormone. Between my first injections and 1981 I had received growth hormone from batches potentially infected with CJD, that’s around 780 possibly infected injections. This is still hard to take in, these injections have always had an impact on my life in one way or another.
Since this time, every year, I travel to the Prion Clinic for various tests including blood tests, an ECG, MRI and a lumbar puncture. I didn’t know what to expect at first, but was freaking out – especially because of the lumbar puncture! I must say, I was very proud of myself for getting through the visit, but it wasn’t as bad as I expected and the doctors there – especially Dr Mok – are really good.
After each visit I have been told that I am fit and well, with no sign of CJD. The doctors say that I seem to have ‘dodged the bullet’, but can never be 100% sure. I am now left wondering, have I survived? Have I exceeded the maximum gestation period of the disease, or not? Even if it is 99.999%, there is always that ‘what if?’. I am not a religious person, but every so often I go to my local church when it is very quiet and have a few words with my mum, just to let her know what’s been happening. So far, I have been able to say “Seems like all is well, I’m ok mum don’t worry! The doctors this year from London seem to think I have dodged the bullet!”.
Over the years, I have had different counsellors. My early experience of counselling felt like going through the same script, having to explain my situation and what has happened, every session, when all I wanted to do was move on and sort my life out. Counsellors would say: ‘David, remind me of your story again?’ and I would think ‘it’s not a story, it’s my life!’ I found it annoying having to go over it again, bringing it to the front of my mind rather than letting it go and forgetting about it. I didn’t feel listened to, and didn’t appreciate paying them not to listen! I stopped having counselling for a long time and felt very alone with no one to talk to – bottling everything up and putting it to the back of my mind with no answers and no support wasn’t good.
More recently, I’ve had some sessions with Edgar at the Prion Clinic. I had 6 sessions initially and found it helpful, so took the opportunity when I was offered 6 more. I’ve also had calls with Beth at the CJD Support Network when feeling really low. They are always there for you with support, they have been so good for me. The thing I have found with these guys is that you don’t have to go over your story as I have had to with other counsellors, they know what you’re feeling and understand what you’ve been through.
I have continued to go down every year for tests at the Prion Clinic. I understand that they are looking for any signs of CJD, but they are also taking samples from me for future research into treatments. It makes me feel really good that I can help and I hope that I can continue to help.
2022 was a busy year for Jo and I. We went to London for me to have my usual tests at the National Prion Clinic – coinciding with a trip that Jo had planned to see Bryan Adams, and attended the CJD Support Network family support meeting in September and the Prion Clinic Open Day in November. It was good to meet lots of great people at the family support meeting and hear about different peoples’ circumstances. It is sad and upsetting, but helpful that we are all in the same boat in one way or another. It was promising to hear about the PRN-100 treatment and it’s results at both the family support meeting and MRC Prion Unit Open Day.
Some of the data shown in presentations at these events by Dr Mok have included me, its mind boggling but interesting to know you are in that complicated data somewhere and that you are helping. I know that I was one of over 1,700 recipients of HgH and that I’m not the only at-risk person left. I would be very interested to talk to people in the same position. We have been put in this situation, whether we like it or not, and its rubbish but we are all in it together. That goes for any form of prion disease, whether it is yourself or a loved one that is affected.
My partner, Jo, didn’t have a clue what CJD was, even though I told her at the very beginning. She embraced it and I am pleased to say we are a great partnership; she comes to every meeting and finds it very interesting as she has a strong science background. I’m blessed to have her. We found it very interesting at the Prion Unit Open Day to see all the labs and sit in on discussions. It was a very good day and we thoroughly enjoyed it and learned so much.
When Jo and I were in Oxford at the family support day, Jo spoke with a lady called Dr Diane Ritchie. It turned out she was doing a talk about iatrogenic CJD. Diane told jo she was anxious as she knew that I was in the room and didn’t want to upset me. She was very interested to talk to me and later in the day when we met, she invited us up to Edinburgh where she is based. We went up to see her and her team in mid-December and it was amazing – they made us feel so welcome. Four doctors, myself, and Jo, sat around a table talking about what they do and what is happening. They were also interested to know about my life and what has happened to me. Later on, we were suited up and shown around the labs, with questions and answers along the way.
Jo asked if they could show me the vials of human growth hormone that had been released for medical research, and I wanted to see them. They showed me the snap-off glass vials of purified water, just like those I’d had, and the vials containing growth hormone. Then they showed me the one vial they had from the potentially infected batches. It brought back so many memories! I really hated those injections! I found it interesting ‘meeting’ the vial again – it was like a reunion. Looking at this little thing that had caused me so much grief, I wasn’t going to let it affect me, I’m a fighter and it made me realise again how lucky I have been, and to be honest has given me an insight as to why I am here – to help.
Being at-risk because of receiving HgH still impacts on my life in different ways. I recently had mayhem when needing a colonoscopy, with the local hospital being unsure of whether and how they could go ahead with the procedure when they became aware that I am at risk. This meant cancelled and re-scheduled appointments, and lots of phone calls back and forth. I have a responsibility to tell medical professionals about my situation and I am not prepared to lie, but sometimes it feels it would be easier if I was! I also continue to experience prejudice in my day-to-day life. Jo recently posted something about my experiences on Facebook, and I have since been treated differently by some people. All of these things, and living with the doctors never able to say I am 100% in the clear, of course have an impact on me.
Since joining the CJD Support Network a couple of years ago, I have read some very upsetting stories about people passing due to this horrific and misunderstood disease. At times I’ve thought about leaving the Facebook group but Jo encouraged me to stay. Eventually, I decided to post something myself and have done so twice, talking about my situation and sending good wishes to others. The comments have been so supportive and I’ve realised that I’m not on my own, people understand. I have also talked about my contribution to the Prion Clinic and how this has given me a new outlook and the desire to do as much as I can to help. A few people have reached out to me and I’m pleased to speak with and help them as much as I can.
In 2016, Jo and I bought a little house in a nearby town. The place needed a lot of work and, alongside my landscaping business, I spent two and a half years completing the work from cellar to roof. Finally, myself, Jo, Jack and our dogs Mia and Mable moved in. Mia has since passed and her ashes are now on the hill overlooking our castle. As well as a proud father I am now a proud grandad to a lovely little girl, and we have another cocker spaniel who is named Beryl, after my mum. She’s 8 months old and certainly keeps us on our toes – I think that’s mum’s little joke! This year, I intend to do some walks for charity and to raise awareness – I’m happy for anyone who would like to join me along the way. I think that being united with one another is so important and would encourage anyone who is interested in events to bring us together to get in touch with the network.
Thank you for reading this and I hope you found it interesting. I wish you all the best with whatever situation you are in with CJD. We are actually lucky that we have something in common and can get support from others through the network, I’m glad Jo encouraged me to stick with it as I would be in a completely different place if I hadn’t.
My experiences have taught me that, no matter what it brings, life is a personal journey and I am here for the ride having come out of the other side with a smile and reasons to carry on.
Best wishes,
Dave and Family
The CJD Support Network would like to thank Dave for sharing his experiences. If you would like further support with any of the themes raised, or have any questions or queries then please get in touch with us at [email protected] or on 0800 774 7317. For more information about iatrogenic CJD, visit our fact sheets page here.