Author Topic: Local Support Groups  (Read 20536 times)

georgeturner

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  • Reason for joining: Patient Familial ATTR amyloidosis
  • Diagnosed: 13 May 2014
Local Support Groups
« on: February 26, 2015, 12:24:15 am »
It's great to have the forum and to be able to support, share and 'meet' with other members online. I've found this very helpful and the support and advice from others invaluable.

I know we are all over the country and abroad too, but would any other members like to be able to meet up with each other locally. Perhaps just for a coffee, and to get to know each other and have a chat.

I don't know how easy it would be to organise. Perhaps you could set something up or suggest something Miriam, to allow interested members to get together.
Slainte Mhath,
George

JohnP

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  • Reason for joining: I have AFib Amyloidosis
  • Diagnosed: August 2011
Re: Local Support Groups
« Reply #1 on: February 26, 2015, 08:16:37 am »
I was thinking along the same lines. The forum would be a useful tool to allow people to make contact and arrangements to meet. I will discuss ways of setting this up with Miriam.

In the meantime can anyone who is interested respond to this post indicating the area in which they live?

Miriam Vered

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Re: Local Support Groups
« Reply #2 on: February 26, 2015, 08:28:18 am »
Good ideas George and John.
Let's see how much interest there is in this, then we can raise the issue with the NAC staff and UKAAG.

Helen33

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  • AL Amyloidosis in kidneys, bones and spleen
Re: Local Support Groups
« Reply #3 on: February 26, 2015, 08:36:21 am »
I would be very interested.  I live in Nottinghamshire.   
Living life with Amyloidosis

patpinchin

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Re: Local Support Groups
« Reply #4 on: February 26, 2015, 09:14:20 am »
Whilst sadly I could not participate in a support group myself because it's so excruciating to talk, I look forward to the day when a local amyloidosis support group meeting could be organised. It would be of so much benefit to sufferers and carers and far reaching advantages beyond group meetings.  :)
Pat

georgeturner

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  • Reason for joining: Patient Familial ATTR amyloidosis
  • Diagnosed: 13 May 2014
Re: Local Support Groups
« Reply #5 on: February 26, 2015, 09:30:42 am »
I live in Glasgow. I'd be interested in meeting up with others. I only know two other patients who live in Scotland. I'm sure there are others. Maybe we could start with groups covering larger areas and, if they are successful, become more local.
Slainte Mhath,
George

Mark McConway

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  • Diagnosed: March 2011
Re: Local Support Groups
« Reply #6 on: February 26, 2015, 09:33:18 am »
I think this is a sound idea and might also help to engage GP involvement too.

If the 'umbrella' group was properly constituted, it strikes me that it would be able to attract funding from The Big Lottery -Awards for All etc to assist in developing awareness\ holding the local meetings and perhaps funding things like transport to the national Patient and Family Info Day in London.




Lesley

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Re: Local Support Groups
« Reply #7 on: February 27, 2015, 10:43:00 am »
I would be interested. I know of 3 people who attend the MRI in Manchester who also attending London (obviously I suppose!) - I guess the people who go to the MRI don't live that far away.
I know this is such a long shot away but Dr Chris Steele has postings on FB - I do keep messaging the TV company about Amyloid and for them to publicise it. I don't hear back but every time I see a posting I send them a nice message. As I say probably wont get me anywhere but its worth it and costs nothing but a few seconds of my time to keep reminding them that more recognition needs to be made of this disease!

Thanks

Mike

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  • Diagnosed: 2006
Re: Local Support Groups
« Reply #8 on: February 27, 2015, 06:57:37 pm »
My wife and I attend the christie in manchester and would be interested in a local group we live in stockport

patpinchin

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Re: Local Support Groups
« Reply #9 on: February 27, 2015, 08:22:42 pm »
I have found the local press more interested than National media. The are quite keen to write up local people's fundraising stories with a photo. You have to be careful they don't re-interpret anything you send them as they sometimes write incorrect information about the disease, eg: calling it cancer and other misinformation.  That does Amyloidosis no favours. The Lady published Michael York's story a while ago and his treatment in the US. Amazingly they did no research on how the disease is diagnosed and treated here. The NAC was not even mentioned! I wrote to the Editor to say how disappointing that was since the NAC is so highly respected not just in the UK but world wide. They did not reply. I have also tried the National press........loads of publications but again no interest. However, as you say Lesley, we must keep trying.
Pat

TonyThackray

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Re: Local Support Groups
« Reply #10 on: March 12, 2015, 12:07:41 pm »
I would be interested in a local support group. I live in Chester so Manchester,Liverpool, North Wales is easy(ish) for me to acres.

Gail Hogg

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Re: Local Support Groups
« Reply #11 on: March 12, 2015, 12:27:18 pm »
I am interested in a local support group. I live in Kilmarnock and would like to get to know other people with Amyloidosis in this area.  I only know two in Scotland but there are many others.
Gail Hogg

patpinchin

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Re: Local Support Groups
« Reply #12 on: March 12, 2015, 01:29:16 pm »
I would certainly be interested in playing a part in a support group but am not well enough to attend meetings. Very willing to do any administrative work. Such groups would meet a great need I feel.
Pat

Elliei21@me.com

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Re: Local Support Groups
« Reply #13 on: March 12, 2015, 03:13:39 pm »
Hi all
I think a local support group would be great so we can all share our experiences and support each other, I live in Cheshire seems there are a few of us in the area or maybe even to organise a meeting one evening at home or a get together to get to meet one another obviously anybody who is well enough to meet, think we all need to share some ideas of making people aware of the illness as you mention amyloidosis and the majority of people say I have never heard about this illness including many nurses I have spoken too at the hospital I attend.
Ellie

JellybabyJan

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Re: Local Support Groups
« Reply #14 on: March 12, 2015, 09:44:44 pm »
Hi

We would definitely be interested in a support group, we're a minority so we need to help each other. We live in Romford, Essex.

Jan & Mike