Author Topic: Scotland Support Group  (Read 34486 times)

Mark McConway

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  • Posts: 63
  • Patient - AL Amyloidosis - Diagnosed 2011
  • Reason for joining: AL Amyloidosis Patient (Diagnosed at 47)
  • Diagnosed: March 2011
Re: Scotland Support Group - Pitlochry Meet Up Report for 13th April 2019
« Reply #90 on: April 13, 2019, 07:07:01 PM »
With the stunning backdrop of the Pitlochry Golf Course in Perthshire, our Group enjoyed good chat and good food at the Pineview Restaurant.

This was the first time that some of our members from the North of Scotland were able to attend.  It was fabulous to meet them at a location that was convenient to people from Inverness - and not too far for the rest of us from the Central Belt.  Part of the success of our group - in terms of sustainability - has been a determination to move venues constantly.  This has brought an added benefit to the group - seeing parts of our country that we may not have considered before.  It keeps things fresh, interesting and adds to the cheery atmosphere that accompanies our meet ups.

At the table, people move around, share stories about their Amyloid patient journeys - and their lives outside of Amyloidosis.  We get tips from one another and find out which meds we are on\ have been on - and what their effects have been on us.  Without exaggeration, these meet-ups are fixtures that we look forward to as part of our social calendar; lifting the spirits of each of us individually and bonding us a group that cares about our fellow 'passengers' on the journey.

Thoughts of everyone going out to George Turner, one of our founding members, who is having a tough time at the moment.  If you get to read this, George, we're rooting for you!


sandra.quinn

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  • Posts: 2
  • Reason for joining: I work for Myeloma UK as the patient and carer support manager
  • Diagnosed: n/a
Hello to Scotland Support Group
« Reply #91 on: April 29, 2019, 09:39:48 AM »
Dear Scottish Support Group,

My name is Dr Sandra Quinn. I am the new Patient and Carer Support Manager at Myeloma UK. I am looking to get in touch with the Scottish Support Group. It would be great to get in touch and come and visit you somewhere this year or invite you to come and visit us in our new head office.

best wishes,

Sandra

Mark McConway

  • **
  • Posts: 63
  • Patient - AL Amyloidosis - Diagnosed 2011
  • Reason for joining: AL Amyloidosis Patient (Diagnosed at 47)
  • Diagnosed: March 2011
Re: Scotland Support Group
« Reply #92 on: May 06, 2019, 10:42:04 AM »
Dear Sandra,

Happy to hear from you...

I'll drop you an email directly at Myeloma UK.

Best Regards

Mark McConway

Gillcraig

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  • Posts: 1
  • Reason for joining: Daughter of mum with AL Amy
  • Diagnosed: March 2019
New member
« Reply #93 on: May 08, 2019, 01:10:47 PM »

Hi everyone
My name is Gill, I joined on behalf of my Mum who was diagnosed with AL Amy a few months ago.  she's on cycle 2 of CVD - being treated in Glasgow.  Her kidneys are impacted and currently being hit by the chemo too so her filtration levels are super low.  Struggling getting the right level of communication from haemo and renal together with the fact her appointment at NAC last week wasn't overly helpful either.
I wondered where everyone is being treated
and what their consultants are like?  I know Amlyoidosis is so rare but it feels like they've never seen it before!

trying to get my mum signed up here as I think this would be useful for her to speak to/meet others going through the same!

thanks
Gill
« Last Edit: May 08, 2019, 04:04:36 PM by Miriam Vered »

Mark McConway

  • **
  • Posts: 63
  • Patient - AL Amyloidosis - Diagnosed 2011
  • Reason for joining: AL Amyloidosis Patient (Diagnosed at 47)
  • Diagnosed: March 2011
Re: Scotland Support Group
« Reply #94 on: May 08, 2019, 10:40:26 PM »
Hi Gill,

Sorry to hear that your Mum's going through a tough time of it at the moment.  I think most of us would agree that the hardest thing at the start is the uncertainty that an Amyloidosis diagnosis brings.  Unfortunately most GPs are almost completely ignorant of the subject and it is only the occasional doctor at the hospital who may have come across it.  In desperation, you start trying to Google things and, to be honest, that can be more alarming than anything.  The truth is that, as individuals, every one of us will have a different journey and outcome.  Staying positive is difficult but, I would argue, essential. 

You asked about where people were treated etc.  I was diagnosed in Dunfermline in 2011 (AL type) and referred to the NAC.  My experience of the NAC has always been extremely positive although I have to say that some of the members on our group were complaining that they were experiencing delays in getting their results and not having calls returned quickly.  I suspect that this down to volume of referrals increasing so, if I were you, I'd keep an open mind about the NAC as it is definitely the centre of excellence for treatment of Amyloidosis and pioneering research into a cure.

If you - or your Mum - would like to join our Scottish Amyloidosis Patient Support Group. just drop me a line at mcconway.mark@gmail.com  I'll introduce you\her to the group by email and then let you know where and when our next meet-up will be.  It's always informal and friendly - generally meeting for lunch - and our next one is likely to be in June or July.

Please pass our regards to your Mum.

Mark


sandra.quinn

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  • Posts: 2
  • Reason for joining: I work for Myeloma UK as the patient and carer support manager
  • Diagnosed: n/a
Re: Scotland Support Group
« Reply #95 on: June 20, 2019, 03:56:02 PM »
Dear all,

I wanted to let you know about Myeloma UK's new AL amyloidosis Support Group e-Newsletter that will launch in July 2019. We have been attracting a lot of interest in this new publication and wanted to let you know. It will feature the latest information on our the services we provide for people affected by AL amyloidosis (i.e. regional events, patient information & more), stories from the AL amyloidosis support group leaders and members who will talk about their experiences, provide you with updates on support group events and any visits we are making to groups across the UK, and tell you more about our fundraising activities. If you would like to receive the new e-newsletter then please copy and paste the following address into your web browser to sign-up online

https://www.myeloma.org.uk/help-and-support/support-group-e-newsletter-sign-up/

The first issue is out in July 2019 and our next issue will be emailed to you in December.

Thank you again for all your support and Chris and I are looking forward to seeing you soon.

best wishes,

Sandra