Author Topic: Local Support Groups  (Read 20522 times)

Annone Butler

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  • Posts: 21
  • Reason for joining: Husband diagnosed with AL Cardiac Amyloidosis in 2010
Re: Local Support Groups
« Reply #15 on: March 13, 2015, 04:15:28 pm »
We live quite near to London so a London Group might be a good idea and within reasonable commuting distance for quite a lot of people.

Sandra Jane

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  • Posts: 14
  • Reason for joining: Patient with Cardiac Amyloidosis
  • Diagnosed: Feb 2014
Re: Local Support Groups
« Reply #16 on: April 03, 2015, 10:46:42 am »
Hi.... I would like to set up a local support group in Colchester Essex.....and surrounding areas. I was diagnosed with Cardiac Amyloidosis Feb 14 at 49 years of age. 

Annone Butler

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  • Posts: 21
  • Reason for joining: Husband diagnosed with AL Cardiac Amyloidosis in 2010
Re: Local Support Groups
« Reply #17 on: April 04, 2015, 08:40:11 am »
It's worth remembering that Myeloma UK runs a number of local support groups. I know that there is one in Central London and there will be others. Clearly most people attending them will have Myeloma but there seems to be no reason why those with AL Amyloidosis could not attend too as it's a related disease. And some will have both conditions. It would be a good way of discussing treatments/side effects as they are basically the same for both conditions. Just a thought. Maybe MUK should publicise this more?

Linda L Hamilton

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  • Posts: 2
  • Reason for joining: I am the patient. Just diagnosed on April 2nd with AL Amyloidosis
  • Diagnosed: April 2nd 2015
Re: Local Support Groups
« Reply #18 on: April 06, 2015, 12:00:06 am »
Hi, I'm in SW London and I'd be interested.

patpinchin

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  • Posts: 603
  • AL - extensive in skin. mouth + palatal nerves '04
Re: Local Support Groups
« Reply #19 on: April 12, 2015, 04:06:00 pm »
I think Annone's idea is a good one. Building on an established group that is already well resourced and strong seems to make very good sense. The two diseases are related and as Annone says many amyloidodosis patients have myeloma too. Would it be a good move for an amyloidosis sufferer or carer who knows of such a group in their local area and is interested in liaising with them to make an approach? Myeloma UK does much good work for Amyloidosis.
Pat

David

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  • Posts: 72
  • Reason for joining: Patient with AL Amy / Kidney involvement
  • Diagnosed: 26.2.2015
Re: Local Support Groups
« Reply #20 on: April 16, 2015, 02:45:25 pm »
Would be very happy to join a London-based group. Count me in. I have lots of questions and would love to pick the brains and knowledge of others with more experience of Amy than a newbie like me.

Drinks on me :-)

Miriam Vered

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  • Posts: 505
Re: Local Support Groups
« Reply #21 on: April 21, 2015, 10:21:45 am »
Hi All,

As people have mentioned, Myeloma UK run support groups in around 60 locations, and they welcome participation of patients with AL amyloidosis, together with myeloma patients, as the conditions are related.
David and Linda who posted here recently might be interested in looking into the London groups.
See http://www.myeloma.org.uk/how-we-can-help/meet-others/myeloma-support-groups/
for information.

If anyone is interested in being an organiser for a group just for amyloidosis or for non-AL amyloidosis, please let me know so I can add your contact details to a flyer I'm preparing for distribution at the NAC.
Right now the flyer will just mention contact details for the amyloidosis patient groups that are starting up in Scotland and Manchester

patpinchin

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  • Posts: 603
  • AL - extensive in skin. mouth + palatal nerves '04
Re: Local Support Groups
« Reply #22 on: April 21, 2015, 01:36:52 pm »
Great. Thank-you for looking into that.  :)
I feel sure that AL Amyloidosis patients being welcomed into an established MUK could really help in the absence of a specific AL group. With a sufficient number of interested AL patients a separate group could be established over time.  :)
Pat

Sandra Jane

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  • Posts: 14
  • Reason for joining: Patient with Cardiac Amyloidosis
  • Diagnosed: Feb 2014
Re: Local Support Groups
« Reply #23 on: April 21, 2015, 08:46:22 pm »
Hi
I contacted the local Myeloma group in my area to make enquiries to set up an amyloidosis support group in and around Colchester in Essex but no one has got back to me Miriam..... I am willing to try again as I am sure there must be others in my area with Amyloidosis. I am happy for you to use my details on your flyer   
« Last Edit: April 21, 2015, 08:47:57 pm by Sandra Jane »

David

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  • Posts: 72
  • Reason for joining: Patient with AL Amy / Kidney involvement
  • Diagnosed: 26.2.2015
Re: Local Support Groups
« Reply #24 on: April 27, 2015, 02:08:06 pm »
For those living in London and nearby, shall we arrange a meetup? From a purely selfish point of view I would very much like to meet  with others and get the benefit of their experience in terms of what to  expect in the future (near and not so near ....), advice etc etc.

If anybody is interested, maybe post here and we can aim to sort out a date/venue?  Either in central London or alternatively near the Royal Free? I had in mind a date in mid-May sometime? .....

Miriam Vered

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Re: Local Support Groups
« Reply #25 on: May 06, 2015, 11:01:46 am »
Hi All,


Attached is the final version of the flyer soon to be printed for distribution at the NAC.
I hope that this will help to get the groups started.

patpinchin

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  • Posts: 603
  • AL - extensive in skin. mouth + palatal nerves '04
Re: Local Support Groups
« Reply #26 on: May 06, 2015, 11:24:02 am »
Perfect Miriam, succinct, to the point and enhanced by the photo of the good looking Scottish trio!
I hope their group will succeed in its aims and that will encourage more groups to open nationwide.

Good Luck everyone.  :)
Pat

georgeturner

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  • Posts: 126
  • Reason for joining: Patient Familial ATTR amyloidosis
  • Diagnosed: 13 May 2014
Re: Local Support Groups
« Reply #27 on: May 06, 2015, 05:13:18 pm »
Hi Miriam,

Thanks to you and Beth for the good work on the flyer.

I'm just back from my Haematology appointment and I was talking to the Myeloma support nurse there about letting others know about our Amyloidosis Support Groups. She was very willing to display our flyer at the support group she runs with Myeloma UK. She has some Amyloidosis people who attend already and would be happy for others to attend their meetings, so perhaps we can reach out to some others with the flyer.

The Glasgow Myeloma Support Group meets at -
Maggie’s Centre,
Gartnavel General Hospital,
1053 Great Western Rd,
Glasgow G12 OYN (next to the Beatson).

They meet from 6:30pm to 8:30pm on Thursday evening, every six weeks.
Their next meeting is on Thursday 21 May 2015.

I have her email address and I will email the link to the flyer.
« Last Edit: May 06, 2015, 05:19:27 pm by georgeturner »
Slainte Mhath,
George

Martin

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  • Posts: 12
  • Reason for joining: My wife has Amyloidosis AL
  • Diagnosed: Cheryl was diagnosed May 2011.
Re: Local Support Groups
« Reply #28 on: May 06, 2015, 07:47:26 pm »
Hi JellyBabyJan, My wife Cheryl and I live in Horsham, West Sussex so not a million miles away from you. Cheryl has the same condition as your husband and on the same organs, except with Cheryl she also has it on gastrotract which stops us from going out most days. Cheryl was diagnosed in 2011 and at present is very stable and we manage, like most on a daily basis. That's my introduction over, I would join the group as it would be great to meet overs if only for a chat.
« Last Edit: May 07, 2015, 07:52:12 am by Martin »

georgeturner

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  • Posts: 126
  • Reason for joining: Patient Familial ATTR amyloidosis
  • Diagnosed: 13 May 2014
Re: Local Support Groups
« Reply #29 on: June 19, 2015, 11:13:54 am »
Brian and I as part of the Scotland Support Group have just attended an informal Myeloma UK reception to mark the opening of their new office in Edinburgh and to learn about the growth of their organisation.
Both Eric Low their Chief Executive and a Myeloma patient gave inspirational speeches and we got a chance to meet with some of the staff and patients.
They were very encouraging about the NAC efforts to try and set up Local Support Groups for amyloidosis, and they already have a link to the NAC flyer on their website, and details of contacts at the bottom of the Myeloma Support Groups Infosheet -

   http://www.myeloma.org.uk/wp-content/uploads/2013/09/Support-Groups-14-May-2015.pdf

They have also offered to publish dates and details of any meetings we arrange. Just contact them by phone or through the Myeloma UK website.

Slainte Mhath,
George