PMRGCAuk
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PMR / GCA local group meetings?

Hello everyone,

I have been diagnosed with GCA and suffered some sight loss in October 2017.

I am wondering if there are any local groups of people with these conditions that meet up to talk to each other and meet in person? If there are, I would be interested in going to these meetings to discuss in person and meet people with the same condition.

I live in the Leeds area, but any meetings of local groups anywhere in the west Yorkshire are would be fine.

I would welcome details from anyone who can help.

Kind regards,

Brian

7 Replies
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pmrgca.co.uk/groups/

There is a new group in Ilkley - if you look at the side bar there is a post about the last meeting in December which probably gives the contact info although it is listed on the link I gave you first of all.

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Okay.

Many thanks.

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Hello bribaz and welcome although I’m so sorry to hear that you have suffered sight loss due to GCA.

Lots of groups around the UK - just click on the following link:

pmrgca.co.uk/groups/

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Okay.

Many thanks.

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Hi bribaz welcome to the club that no one volunteered for. I go to the Ilkley meet up its not a formal meeting just a small bunch of us meeting for a chat and a sandwich the details will be on the side bar a couple of weeks before the meeting. There is a possibility that future meetings may be held in Leeds, investigations are underway!

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Hi Brian

I am one of the 'organisers' of the Yorkshire meet-up! First of all, I'm sorry to hear of your diagnosis and sight loss but welcome to our group.

We are a new group and have met just 4 times in 2017, as CT-5012 describes. We've met in Ilkley so far, at the Clarke Foley centre, as the other organiser, Primrose2, lives there.

The next meet-up will be on 1st March in the Community Hub on the 4th floor the John Lewis store in Leeds - more or less in the haberdashery department! It's next to 'The Place to Eat'. Primrose2 will put up another post, but save that date.

I'll send you a private message to ask if you'd like to be on our mailing list, as I keep that and send out an email reminder to everyone nearer the time.

Looking forward to meeting you in March.

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Hi,

Thank you for your message.

Yes, that would be fine - do you know the time of the meeting on 1 March at this stage?

I am in complete "limboland" at the moment. I have been off work sick since 16 October, 2017, after going a full 15 years with no sick leave before this. Even with Polymyalgia I still carried on regardless, but the sight loss in my left eye with GCA, and blurred vision in my right eye caused by the high steroid dose, stopped me in my tracks. I will not know until probably mid Feb, when the steroid dose comes down to 15 mgs a day, what my return to work position will be.

It would be good to talk to people face-face at the group meeting to hear what everyone else has gone, and is, going through with this. It has been like a Roller Coaster ride of emotions, which I am sure everyone else will have experienced.

Yes, I would also like to be on your mailing list.

Best wishes,

Brian

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