I just finally got round to reading this and am left feeling more inspired and positive on the whole. There is still a long way to go and so much to learn about the baffling diseases of PMR and GCA but when I think back to when I was first diagnosed and struggling between 2012 and 2015, there are definite things that make me feel more positive that thngs are changing than I did 8 years ago:
Awareness of PMR and GCA has grown. Certainly people who have it and are IT savvy can Google the conditions and find great resources such as the PMRGCAuk charity website, the Helpline and this forum
I had such a hard time getting diagnosis and the right treatment when I got PMR in my 50s. I was told nonsense like I was 'too young to have PMR' and 'even if it was PMR it woud have gone after 2 years', two of many myths that are still spouted by many rheumatologists and GPs , but the woman featured in the article who got it in her 50s has had a slightly easier time than some of us, which shows progress
HealthUnlocked and all of you moderators who regularly and patiently answer our queries, even ones you've been asked a million times before are just amazing. I'm so glad you got a write up in the magazine at last. It is by far the most useful resource available. I'm grateful not just for the experts on HU, but also the wealth of knowledge and experience and kindness and support that people on HU are willing to share
Dr Mackie. What luck that she has taken up our cause which such enthusiasm and hope, and she is helping to educate other rheumatologists and GPs, and she really beieves in the power of patient involvement and listening to the people who live with these diseases
Everyone at the charity, tryng to do everything on a shoestring. Yes we still need to fight for better treatment, availability of things like tocilizumab, educating health professionals but Rome wasn't built in a day
The people who volunteer in whatever way. but particulary running groups and the Helpline. Every hour that someone volunteers helps someone
I could go on but this post is long enough already. I basically just wanted to let the people who do stuff like write the magazine or do any of the things above really help to further the cause and deserve a really big round of applause and thanks. If you're not yet a member of the charity please sign up, every £ helps
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tangocharlie
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I just cast my eye over the Newswire - including Humphrey's foreword. I think maybe he needs to ask how long people have had PMR before taking the number of over 70 year olds on the forum as confirmation of the age of diagnosis being 72, I am amongst the "over 70s" on those demographics but I was eventually diagnosed at nearly 57 after having symptoms for the previous 5 years since the age of 51. I've been an active member of this forum for nearly 10 years and of 2 others before that. I'm not the only long time member of the forum.
I missed that bit and have just re-read it but still don't really understand what he's getting at. I think the charity is sitting on a potential mine of information that isn't being used and fed back to the medical profession. It would also be quite easy to survey the members and find out when they were diagnosed and how long on steroids etc. I filled in a long questionnaire a few years ago but have never seen the results published.
My other main bug bear is that all the groups are concentrated down south, yet a charity was originally largely started in the north by the likes of Jinasc etc and was merged into the current one. I'm sure the prevalence of PMR and GCA is just as high in the north, maybe even more so given the possible involvement of the 'Viking gene'. If the incidence is hypothesised at 1 per 1000 then the urban populations of West, North and South Yorkshire, Greater Manchester, Lancashire, Tyneside etc must contain tens of thousands of PMR and GCA sufferers who need support, and could also contribute to the charity's work. There are probably about 400 people out there in Leeds alone and so far in th Yorkshire group we know of about 10-20 of them
South East mainly tbh…. South West & Wales quite sparsely served as well [to be fair less populated] but certainly no centres of excellence for treatment - and we do have some Vikings as well..😊
I believe the highest incidence of PMR is in Hampshire and Dorset although this paper generalises it to "the south of England" but I suspect that has a lot to do with where people retire to and that the northern cohorts tend to put up with a lot more rather than bother the doctor.
Max Yates (another Good Egg) says "These conditions have been confirmed to be, respectively, the most common forms of vasculitis and inflammatory rheumatic disease in the UK and will become commoner as the population ages "
Don't think we have a group in the NW, (I don't count Yorkshire as NW) must be loads of people with PMR/GCA up here. Given the size of Yorkshire and the NW there must be scope for many groups if they are going to local enough for people to get to.
There was a NW one for a while. the woman wanted to get her own charity up as well. But I don't think it lasted - don't think there was a lot of backing from rheumies and you do need some. I think transport is a problem in Yorkshire and the NE,
Hear hear! What a positive, heartwarming post, TC! I echo everything you’ve said about the volunteers and experts: I don’t know how on earth they find the time and energy. The support and advice and friendship means that no one is left to struggle on alone. Dr Sarah Mackie deserves recognition for believing us and for giving us credit for involving ourselves in our own health.
Although I didn’t choose to have PMR I am so grateful that I did choose to become a member of the charity.
Such true words and so well said.....a big hug to all who keep this forum going. Seriously, until I found you in October of 2019 ? fog....I think.... I was a basket case and had no idea what I had, had one eye I could see out of and -0- confidence in anyone....just you beautiful people.💞💞💞💞💞💞
Yes! My thanks to you and to everyone on the forum and the dedication and patience of the contributors. The moral support, the humour, the courage, the sharing....the forum is the first thing I click on and read in the mornings: my life belt in uncharted PMR/GCA seas.
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GCA - I am not going to apologise for this long post. 
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