As anyone who has read my posts before knows, like many who were fortunate enough to find this forum, when I found PMRGCuk....I'd gotten a diagnosis of GCA in August of 2019 with a medical explanation of what happened, why I had lost the sight in my left eye and a whole bunch of prednisolone...and nothing else.
More than anything this forum offered knowledgeable support but more...the fact that there was hope and the awareness that this 'process' had a light at the end of the tunnel. I felt surrounded and comforted by fellow patients AND it brought a great deal of comfort to my family. It gave me the tools to ask the right questions of my providers.
When I saw Candy's "Admin Changes" with NO ability to inquire or respond, I was shaken. Sadly, Candy did not respond to a private message. If there was not enough time for Candy to answer many individual inquiries even a post acknowledging the concern of members would have been appropriate....but nothing, which simply left me not understanding what happened and would happen.
I'm sure there is much I do not know, I just hope that decisions are not being made at the expense of needy suffering people who rely on the forum's experienced survivors. Yes, a charity is a business, but it should first be designed to best serve the people...that is a personal evaluation I can make only after some time has passed.
I have run charitable health groups before, mostly for epilepsy and brain injuries, they can do a great deal of good, raise money, and with thought, do both.
My thanks....to all the moderators who gave so much of themselves.
My thanks...to all of the members who jumped in with information.
My thanks.. to patients sharing medical points that educated me & my Dr.
My thanks...for the reminders that I was not in a hopeless state, just in progress.
My thanks...to Fran for acknowledging everyone's concern before closing it down.
My thanks.. to members who have tried to reassure, for there is still anxiety on this journey.
I close with gratitude and my sincere hope that the forum that has been a lifeline for me and many others...remains a safe place.
xo💖
Written by
Grammy80
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That's a lovely post and sums up what I think a lot of people felt yesterday. I am sincerely sorry your email to candy has not been responded to and I would encourage candy to do this asap.
We are still around for everyone and will.continue to try and help everyone as much as possible as will no doubt all of our members who give so freely of their time and knowledge. Without the input of so many people the forum wouldnt run as well as it has done and we can only hope that the changes enforced on everyone dont ruin it for the future.
It is obvious to me how much you care...you and what I call "The Core" of people who have the patient experience and perspective are so important to me and many.
Without that experience it would be like throwing out questions and concerns to the wind...you have all been there to field them and provide answers that have made a huge difference in my journey.
There are just not enough words to express my thanks....SO...when this ding-dong virus is gone...if I'm still around I'll fly over to England and we'll gather! That is not an empty proposal.
I think if last night's debate proved anything it is that many of us value and care what happens to this forum. It has been a place for help and support for me too and a source of information I can trust, a rare thing these days. We need to continue to stand together so that the newly diagnosed have the support in the confusion that comes with diagnosis.
👨🏾🤝👨🏾👨🏾🤝👨🏻👨🏼🤝👨🏻👩🏾🤝🧑🏻👩🏿🤝🧑🏽👨🏿🤝👨🏽👨🏼🤝👨🏼 It is not a dramatic statement when I say this forum saved me...helped me look to a future through a cloud of steroids and a lack of information. I'd never heard of GCA and I KNOW it sure isn't common where I live. Nurses would whisper in my ear in the ER.."What is GCA" ...the ophthalmic practice I go to...HUGE...has two cases...fortunately my rheumy was pretty bright but wanted to go at warp speed tapering but finally sent me to 'the city' to another specialist for a second opinion. But...I favor the UK way....
I'd have been lost....to say nothing of the moral support from all these who are so brave.
You said it so eloquently Grammy80. I’m so afraid of losing this wonderful site. I don’t really understand what’s going on but changes won’t improve something that’s already perfect. I just found PMRpro who understands my illness and has helped me so much with my lack of knowledge. Then there are all the wonderful people who rally around all of us who feel lost. Hope those in charge have a heart and soul.😪
I could not have said it better....the fear of losing people you trust. "Improving something that is already perfect"...so well expresses what put fear in the hearts of many of us.
These people that we have come to rely on care more about giving and helping us than anything...and I think you can count on them. I am.
This forum has been around for some time now, and despite the occasional changes/disagreements/exclusions during the years it still continues to provide advice to those who need it.
It will continue to do so, it’s getting more members every day, although any who joined recently may wonder what on earth is going on.
Remember the whole is stronger than any individual.
Wise words and words I can count on for sure. I lived in the state of NH for a while years ago and on the number plate it read~"United we stand, divided we fall."
Have I missed something big? Have looked back at the changes announced and don't see anything that I think would affect the great advice given by the knowledgeable people on this forum. Hope not anyway. As you said, this forum has been around for a while so I'm sure the helpful people will continue to help anyone looking for advice and information.
It’s not so much about the advice given by bona fide members, that will go on - but any forum has posts and replies that can be regarded as scamming, trolling etc.
In general we never get to see that, but that’s because the moderators are always on the lookout for anything untoward, and deal with it before it sees the light of day.
What some are worried about is the fact that the moderators have been discharged of their duties, and the monitoring now will be carried out by 2x part-time Admin staff.
As this forum is 24/7 there are bound to be some inappropriate posts that get through, and they may cause distress or worse to vulnerable patients.
We hope that everybody behaves responsibly- but alas it’s not always so!
I hope as people read your response they will be vigilant. Just today I had someone following me whom I don't know and the individual has no interaction or posts. When I inquired, I was directed elsewhere. I just want to know how to block someone I've not had nor wanted any interaction with~!!
It happens indeed. I got two unwanted private messages and the gals showed me how to handle it. That is also when I changed my avatar to a flower...a suggestion of one of the gals. Keep those rose-colored glasses...they'll help you through a lot~! xo
I totally agree~!! How do you ever thank folks who really helped you save your sight? Another blessing...their questions and comments made me a better advocate for myself. xo
I have just read these posts and am confused .. could somebody please link me to the ‘announcement’ post mentioned in Grammy80 post? I’ve tried searching for it .. by the sounds of the posts above there are some major changes I’d like to know what these are... Hope we can still post and receive replies in here .. it’s been such a help to me and I have told others about it, including medics. Thanks
The moderators role has been removed. We are now ambassadors and the moderator role has been taken over by CandyH and Fran_Benson who were already in admin posts with PMRGCAuk.
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