Author Topic: Scotland Support Group  (Read 45797 times)

georgeturner

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  • Posts: 126
  • Reason for joining: Patient Familial ATTR amyloidosis
  • Diagnosed: 13 May 2014
Re: Scotland Support Group
« Reply #30 on: July 08, 2015, 08:44:11 pm »
July Meetings

We are now going to meet twice in July.
On the 14th we will be meeting at the Lighthouse, Mitchell Lane, Glasgow at 12:30.
On the 23rd we will be meeting at the Maggie's Centre, Gartnavel Hospital, Glagow at 6:30 - 8:30. Some of us plan to meet up beforehand.

If you would like to join us, please come along. You can email me or post on the forum for more information or directions, or if you can't make the July meetings but are interested in meeting some other time just let us know and we will try and arrange a suitable place and time to meet.
Slainte Mhath,
George

georgeturner

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  • Posts: 126
  • Reason for joining: Patient Familial ATTR amyloidosis
  • Diagnosed: 13 May 2014
Re: Scotland Support Group
« Reply #31 on: July 16, 2015, 10:23:24 am »
July Meetings

The group met again on the 14th July at the Lighthouse. Gail, Mark and I were joined by Maureen and her husband Roy. We spent the time getting to know one another, sharing our experiences of coming to terms with amyloidosis and discussing how we are coping with it.
We are planning to meet up again sometime in October.

Meanwhile Gail, Brian and myself are going to meet on the 23rd July at the Myeloma UK Meeting at the Maggie's Centre, Gartnavel Hospital, Glasgow between  6:30 and 8:30.

If you would like to join us please e-mail me or post on the forum.
Slainte Mhath,
George

Mark McConway

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  • Posts: 70
  • Patient - AL Amyloidosis - Diagnosed 2011
  • Reason for joining: AL Amyloidosis Patient (Diagnosed at 47)
  • Diagnosed: March 2011
Re: Scotland Support Group
« Reply #32 on: July 16, 2015, 08:41:18 pm »
Just wanted to acknowledge the efforts of George In getting our informal support group off the ground.  It's been nice to have a meet-up in a non-medical environment for a coffee or bite of lunch.  Although Amyloidosis has brought us together, it's not the only thing to talk about and I feel that's important to remember for anyone else thinking of joining us - or for starting their own group.  Support can mean just being in the company of others who've experienced what you've been through.

Maureen

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  • Posts: 2
  • Reason for joining: Hereditary Amyloidosis Patient
  • Diagnosed: August 2008
Re: Scotland Support Group
« Reply #33 on: July 17, 2015, 04:32:23 pm »
Just like to thank George for inviting me to the Meeting on 14th July at the Lighthouse, my husband was also able to attend. It was good to be able to talk to others about living with amyloidosis and share some of the experiences we have had. It was lovely meeting Gail and Mark and hopefully we can all catch up again in October.

georgeturner

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  • Posts: 126
  • Reason for joining: Patient Familial ATTR amyloidosis
  • Diagnosed: 13 May 2014
Re: Scotland Support Group
« Reply #34 on: September 15, 2015, 11:31:48 am »
September Meeting

On Thursday 24 September some of the group will be meeting at the Maggie's Centre, Gartnavel Hospital, Glagow at 6:30 - 8:30. Some of us plan to meet up beforehand for a chat and a bite to eat.

If you would like to join us, please come along. You can email me or post on the forum for more information and directions, or if you are interested in joining the group
Slainte Mhath,
George

georgeturner

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  • Posts: 126
  • Reason for joining: Patient Familial ATTR amyloidosis
  • Diagnosed: 13 May 2014
Re: Scotland Support Group
« Reply #35 on: September 25, 2015, 11:43:33 am »
October Meeting

On the 24th of October all of the group are hoping to meet at the Falkirk Wheel. The plan is to meet at the side entrance to the Visitor's Centre at 2:30.

If you would like to join us, please come along. You can email me or post on the forum for more information. If you can't make the October meeting but are interested in meeting some other time just let me know and we will try and arrange a suitable place and time to meet.
Slainte Mhath,
George

Ruth G

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  • Posts: 1
  • Reason for joining: Lung biopsy indicates Amyloidosis but tests not complete
  • Diagnosed: August 2015
Re: Scotland Support Group
« Reply #36 on: October 08, 2015, 09:08:59 am »
I have been following forum posts for some weeks now but given all the unknowns I haven't felt able to participate but I would be interested in joining the Scotland Support Group. I'm a healthy(!), active 48 year old, mum to 3, and live in Edinburgh. Hopefully I will have a clearer picture of my condition after my first trip to NAC next week. I suffered a tension pneumothorax which resulted in surgery to repair a hole in my right lung in June this year. In August I was told that the biopsy showed amyloid deposit and subsequently I have had blood tests, x-rays, a bone and bone marrow sample taken and ecg. I have other fairly mild symptoms which make me think the amyloidosis is not localised but I guess the bigger picture will reveal itself next week. Happy to travel and self-employed so pretty flexible. Do let me know if another gathering is planned. Ruth

georgeturner

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  • Posts: 126
  • Reason for joining: Patient Familial ATTR amyloidosis
  • Diagnosed: 13 May 2014
Re: Scotland Support Group
« Reply #37 on: October 08, 2015, 02:22:20 pm »
Hello Ruth

Welcome to the forum. Sorry to hear about your lung problems, hopefully you have made a good recovery from surgery. It's good however that the amyloid deposit has been picked up. It's so often missed, and as you have probably read on the forum, early diagnosis is essential. It's a worrying time, but I found things much easier after my visit to the NAC. All the staff receptionists, technicians, nurses and consultants are so helpful and friendly. You will receive the best possible care and attention there.
You are most welcome to join us at 2:30 on the 24th of October at the Falkirk Wheel Visitor Centre. That may be a bit too soon for you, but I will be posting details of future meetings here on the forum. Some of the group also go along to the Myeloma UK Support Group meetings at the Maggie's Centre at Gartnavel Hospital, Glasgow.
If you like, I can add you to the email list I use to try and set suitable locations and times for our meetings. Email me through the email option on the member list of the forum.

I hope all goes well on your NAC visit.
Slainte Mhath,
George

georgeturner

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  • Posts: 126
  • Reason for joining: Patient Familial ATTR amyloidosis
  • Diagnosed: 13 May 2014
Re: Scotland Support Group
« Reply #38 on: October 22, 2015, 10:39:30 am »
Meeting - 24th October at the Falkirk Wheel

On the 24th of October the group is meeting at the Falkirk Wheel. The plan is to meet at the side entrance to the Visitor's Centre at 2:30.

I'd like to welcome the new members of the group and look forward to meeting all those who are coming along this time.

If you would like to join us, please come along. You can email me or post on the forum for more information. If you can't make it this time, but are interested in meeting some other time just let me know and we will try and arrange a suitable place and time to meet with you.
Slainte Mhath,
George

georgeturner

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  • Posts: 126
  • Reason for joining: Patient Familial ATTR amyloidosis
  • Diagnosed: 13 May 2014
Re: Scotland Support Group
« Reply #39 on: October 25, 2015, 03:47:02 pm »
October Meeting

Thanks to everyone for coming along to the Falkirk Wheel. We had 7 members and their partners at this meeting, so fortunately Mark had arranged for a table to be reserved for us in the café at the visitors centre. Is was good to meet our new members and catch up with each other over a bite to eat. Apart from our visits to the NAC or hospital, it's very rare to meet anyone who has amyloidosis or who has even heard of it.

We are planning to meet up again sometime in January.
Myeloma UK also have meetings at the Maggie's Centre, Gartnavel Hospital, Glasgow Thursdays 6:30 - 8:30, date still to be determined. Anyone with amyloidosis, not just AL, is welcome to attend.
I will post details of these meetings once the dates have been set.

If you would like to join us, you can email me or post on the forum for more information.
Slainte Mhath,
George

Wallace

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  • Posts: 5
  • Reason for joining: Parent and Husband of FCAS2 Patients
  • Diagnosed: July 2014
Re: Scotland Support Group
« Reply #40 on: October 26, 2015, 11:37:47 am »
My name is John Wallace

I have a wife and son with FCAS2.  We are in Edinburgh.

My son has been being dealt with by RHSC in Edinburgh and Great Ormond Street in London who diagnosed them both in July this year after a gene hunting study on all the family.   My wife has her first appointment with NAC next month.


georgeturner

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  • Posts: 126
  • Reason for joining: Patient Familial ATTR amyloidosis
  • Diagnosed: 13 May 2014
Re: Scotland Support Group
« Reply #41 on: October 26, 2015, 02:54:47 pm »
Hello John

Welcome to the forum. Sorry to hear that your family has been affected by FCAS2. I only know that the Inherited Periodic Fever Service for the UK is based at the NAC, so I assume that FCAS2 is an inherited syndrome, probably very rare.
   http://www.amyloidosis.org.uk/fever-syndromes/the-periodic-fever-service-at-the-nac/

It's good that it has been diagnosed and your wife has a referral. The staff there provide a first class service and your family will get the best possible treatment.

If you post under General Discussions, you may find someone who has the same or a similar condition.

When I was referred, the NAC provided accomodation/breakfast at the Premier Inn, which is close to the Royal Free. My local Health Board reimbursed travel and other costs. I assume Edinburgh will do the same. I travel down by train and get the tube out to Belsize Park station which is not too far from the Premier Inn.

Our group all have amyloidosis. Mostly AL amyloidosis, but 2 of us have familial forms. You would be very welcome if you would like to meet up with the group. We plan to meet again in January. If you like, I can add you to the email list we use to arrange our meetings - email me through the email option of the forum.

I hope all goes well on your wife's appointment next month.
Slainte Mhath,
George

Mark McConway

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  • Posts: 70
  • Patient - AL Amyloidosis - Diagnosed 2011
  • Reason for joining: AL Amyloidosis Patient (Diagnosed at 47)
  • Diagnosed: March 2011
Re: Scotland Support Group
« Reply #42 on: October 28, 2015, 08:27:24 am »
Just wanted to say that I really enjoyed our meet up at The Falkirk Wheel on the 24th.  These meetings are friendly and very upbeat, notwithstanding the very serious - and sometimes sad - experiences that the group get to share.  Looking forward to seeing everyone again in January, with maybe a few more faces too. 

patpinchin

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  • Posts: 603
  • AL - extensive in skin. mouth + palatal nerves '04
Re: Scotland Support Group
« Reply #43 on: October 28, 2015, 11:00:37 am »
Fantastic to read about the very successful latest gathering of the Scotland support group, which has grown very quickly since the meeting early this year of the first trio. Great friendships have been quickly forged through a common bond....being members of THAT club no-one wished to join!
 A warm, friendly and mutually supportive group which is hopefully blazing a trail for others to follow.  Such heartening reading. :) :) :)
Pat

georgeturner

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  • Posts: 126
  • Reason for joining: Patient Familial ATTR amyloidosis
  • Diagnosed: 13 May 2014
Re: Scotland Support Group
« Reply #44 on: November 06, 2015, 09:29:14 pm »
December Meeting

The Myeloma UK Support Group will be meeting on Thursday 3 December at the Maggie's Centre, Gartnavel Hospital, Glasgow, 6:30pm - 8:30pm. They have welcomed our group to come along, no matter what type of amyloidosis. It's all very informal. A chance to sit round the table with a tea or coffee, chat and listen to each others stories, and ask Lesley, a clinical nurse specialist, any questions.

Feel free to come along and join us. Post, email or PM me through the forum for any more information.
Slainte Mhath,
George