Anne’s story

Hello. My name is Anne. I am 53 years of age and I live in the East Midlands in the heart of what was the mining industry. My brothers, father, grandfather and uncles all worked in the coal mines, which is interesting as links are being made with coal mining and Paget’s. I am married but have not been blessed with children.

Working life

I left school at 17, when the local coal mine closed and my father was made redundant, as the family had no other means of income. I initially worked in a warehouse for 10 years and then went on to work for the police service, where I’ve been for the last 27 years. I have a love of animals and devote all my spare energy towards my two dogs who are my surrogate children.

First encounter with Paget’s

In 2011, my maternal uncle (also a miner) attended his GP’s surgery complaining of bad headaches. He had tried all the usual pain medication to no avail and was convinced he had something serious and terminal. Upon attending his appointment, the clinician noted immediately that his skull had some deformities and was convinced that this was in fact Paget’s disease. He had some tests and this was confirmed. The researchers carrying out the ‘Zoledronate in the Prevention of Paget’s’ (ZiPP) study advised him to inform his family and encourage them to be tested for Paget’s. As a result of this, my mother (his sister) was tested and she was also found to have Paget’s in her spine. I received a call from my mum advising of the diagnosis and asking that I contact the ZiPP study because of the familial link. I did this and blood tests were completed which showed that I also had the sequestosome 1 (SQSTM1) gene. One of my brothers had the blood test but was found not to have the gene so his journey with the study ended there. I then visited the ZiPP team in Edinburgh, in May 2012, for the initial scans and infusion of either zoledronic acid or a placebo.

Paget’s diagnosis

I participated in the ZIPP study for the seven years as agreed which takes us to 2019. It was in April 2019 that I noticed that I was having some dull pain in my left elbow. I brushed it off but the pain just wasn’t going away. I consulted my GP who marked it off as tennis elbow and advised me to give it time. I was then considering why. Why had I got tennis elbow? There was nothing to have caused it… Unless it was due to the amount of time spent crocheting or maybe… It was at this point that I surmised that the cause had to be the dog. A new puppy, pulling on the lead, changing direction at random – ‘ooh a leaf’ or ‘ooh a crisp packet’ – it had to be the dog’s fault. But 2 months later I made the trip to see the team in Edinburgh for the end of study tests and it was here at this point that I was given the news – you’ve got Paget’s in your left elbow and a little bit on your skull. It wasn’t the dog after all! Poor Lottie dog.

I did agree at this point to do the extended 5 years of the study which brings us to 2024. I am a lady who likes her ink and have several tattoos. During one tattoo session I was having work on my left arm, when the artist was doing the area near my elbow, I noted that the pain was far worse than normal and hurt more than anywhere else ever had – even the same location on the other arm was nowhere near as painful. Hot and cold sweats. Feeling nauseous. Lightheaded. All very strange. I mentioned this to the team and was advised the ‘Pain in Paget’s’ study found that people with Paget’s disease had increased perception of pain and vibration over affected areas. So, this experience, in hindsight, is almost certainly attributed to Paget’s disease in my elbow.

In July 2024, I again met with the team in Edinburgh for the final tests and it was revealed that way back in 2012, when I started on her journey with the ZiPP study, I had been given the placebo and not the zoledronic acid. So, based on the results of the trial, it was suggested that an infusion of this would hopefully help so this is what happened. The lovely nurse Jo accompanied me to all the tests and treatments which all went very smoothly. The day after the infusion I did feel a little unwell but that was expected, and since then have made good progress and now have no pain in my elbow at all and only occasional head pain.

Engaging with the team from the ZiPP study has been enlightening and an honest pleasure. There was never a single second that I questioned participating in the trial. Why would I? It’s a win-win situation. If people don’t engage with research, then we will never learn anything. Be selfless. Do something for humanity. The people I have met on the trial are all without exception some of the loveliest people I have met. Ever.

My message – if something is hurting that isn’t normal – get it checked. It’s very easy to dismiss the occasional twinge, and unless we know what the cause is it is very easy to mistake it for something else. Oh and don’t blame the dog! 😊

Anne discusses her experience with Professor Stuart Ralston in the video below.