At the beginning of June 2022 my mum Janet miveld was happily living the retired life, walking her dog and feeding the local horses. She was fit and healthy, even lost a couple of stone to avoid diabetes! She started to have vision problems and saw the optician who sent her straight to hospital. They could find no physical reason for her sight problems so Gave an initial diagnosis of FND (functional neurological disorder) something which comes and goes for no real reason, we were not worried. Then at the start of July she had symptoms which looked a little like dementia (also something you can get with FND) but we started to become concerned, after a few weeks we decided to let the specialist know my mum was experiencing some more severe symptoms. A few days later my mum walked into A&E demanding to see a dr. By the time I was able to get to her less than 48 hrs later she was unable to communicate or get out of bed. We all watched as every last piece of my mum was taken away, we then had to watch as she slowly died. It is the most horrendous and heartbreaking thing I have ever witnessed…..that was my mum! By the time her diagnosis came she was so far gone that she never knew her fate, had we known from day one then the experience would have been even worse because there isn’t any treatment to slow things down, no cure, we would have just had more weeks or sickening worry. Every family who receives a diagnosis of CJD will have to experience the same thing we did, this has to stop. You have a lifetime chances of getting sporadic cjd of 1/5000 so not as rare as it may seem, yet no treatment…nothing at all other than making you as comfortable as possible! Please donate anything you can to help and also in memory of my beautiful mum Janet Miveld. 

Creutzfeldt-Jakob Disease (CJD) is a rare illness and is one of a group of diseases called prion diseases, which affect humans and animals. Prion diseases exist in different forms, all of which are progressive, currently untreatable and ultimately fatal.The National CJD Research & Surveillance Unit aims to monitor the characteristics of all forms of CJD, to identify trends in incidence rates, to study risk factors for the development of disease and to contribute to improving the quality of care for those with CJD. Based at the Western General Hospital in Edinburgh, the Unit brings together a team of clinical neurologists, neuropathologists, scientists and others.