National Amyloidosis Centre Patient Forum

Amyloidosis => Local Support Groups => Topic started by: Miriam Vered on March 19, 2015, 10:14:00 am

Title: Scotland Support Group
Post by: Miriam Vered on March 19, 2015, 10:14:00 am
George Turner has kindly agreed to organise a local support group in Scotland.
He'll contact people who've shown interest and post arrangement details here on the forum.

Title: Re: Scotland Support Group
Post by: georgeturner on March 19, 2015, 11:10:13 am
I've been asked by Miriam to organise the Scotland Support Group. If you are interested, please let me know where and when you'd like to meet and I'll try and arrange a suitable time and place for a first meeting.

Gail and Mark, I see you have expressed some interest. Any suggestions?

Anyone else who is interested, please let me know.

If we can start this going, hopefully it will take off.

Thanks.
Title: Re: Scotland Support Group
Post by: Mark McConway on March 20, 2015, 12:14:17 pm
George,

I'm happy to meet up in Glasgow at some point during April.  Depending on numbers, a coffee somewhere might be enough to start the ball rolling.  If there are a few people then we might need a room somewhere.  Perhaps we might be able to get an hour in a room at The Golden Jubilee Hospital.  I could make a few enquiries if that seems like the route to go.

Miriam, without disclosing names, are you able to tell us how many patients of the NAC come from Scotland?  Also, do you have a rough idea of where the majority live (eg. Glasgow, Edinburgh etc)?
Title: Re: Scotland Support Group
Post by: Miriam Vered on March 20, 2015, 02:19:32 pm

Hi Mark,


Regarding your question about NAC patients from Scotland, I don't have the figures but I'll look into it.
The consultants have said that they would prefer to advertise the interest of forum members in setting up local support groups rather than us approaching patients directly.
I will write an article on this in the next newsletter and we will produce a one page flyer to be given out at the NAC.
So right now only forum members are aware of the support group idea and the only people from Scotland who have expressed an interest are you, George and Gail.
But I thought it would be a good idea to get the ball rolling. I hope that if people see that a core group exists, it will then grow gradually as awareness spreads.
I have no idea how long it will take.
Perhaps if the 3 of you decide to meet up and fix a date and place, we could then advertise these details in the flyer?

Title: Re: Scotland Support Group
Post by: georgeturner on March 20, 2015, 06:02:24 pm
As Miriam says, I think there are only 3 of us from Scotland who are interested at the moment. I'm sure there are others in Scotland who might be interested, but may well not be on the forum. I had been planning to meet with Gail prior to being asked to organise this group. We had met again in Glasgow after our first meeting on the MRI Cycle Challenge, and it is my turn to travel to meet with her. I'm still waiting to see when she'd like to meet.
Mark, I'm retired now so I'm pretty flexible about where and when to meet. I don't know how flexible you are - work, family, etc., but a first meeting in Glasgow in April would be fine for me. I suggest we leave it a bit longer and see if we get any more interest. Then we can decide a place and time to meet. I think we'll be OK just meeting somewhere for a coffee and talking over how we want to proceed.
Your suggestion of the Golden Jubilee sounds good, if you'd like to make some enquiries for the future that would be great.
Hopefully once we get it started it'll grow, and we might be able to meet with some medical staff.

Look forward to meeting you, and hopefully some others, in April.
Title: Re: Scotland Support Group
Post by: georgeturner on March 26, 2015, 05:54:24 pm
Hi Mark, Gail and anyone else who may be interested.

Maybe we can get this going by trying to fix a date and time in April to meet in Glasgow.

I'm going down to London on the 13th for an appointment at the NAC on the 14th. I won't be back in Glasgow till the 19th. Apart from that and weekly injections which should be flexible, I should be available to meet up any other time.
If you can let me know by post or e-mail when you are available, then we can fix a date/time suitable to everyone . Also if you have any thoughts on where to meet please let me know.

Title: Re: Scotland Support Group
Post by: georgeturner on March 26, 2015, 09:59:36 pm
Mark,

Gail has been in touch.
She is free from the 22nd of April till the end of April except the 27th. She would probably come by bus, or train if that suits you better, and we could meet one another at the bus/train station.
Let me know if any of these dates suit, which one you would prefer, and if you have any thoughts on where we could go to talk things through.
Title: Re: Scotland Support Group
Post by: Mark McConway on March 29, 2015, 05:31:53 pm
George,

I'm fine for either the 22nd or 23rd April.  I'll be driving through to Glasgow.  Where is Gail coming from? 

If we finalise on Glasgow as the venue, there are quite a few nice cafes at the Trongate end of town - or even around George Square.  Depending on where Gail is situated, I could maybe pick you up in Glasgow and drive to her neck of the woods.  Mark

Title: Re: Scotland Support Group
Post by: dkjcmw on March 30, 2015, 08:48:39 am
A Scotland support group is something I would be interested in but as we are at the very early stage of diagnosis it may be a awhile before we feel ready for this. We are based in moray..
Title: Re: Scotland Support Group
Post by: georgeturner on March 30, 2015, 12:15:04 pm
A Scotland support group is something I would be interested in but as we are at the very early stage of diagnosis it may be a awhile before we feel ready for this. We are based in moray..
Hello,

Sorry I don't know your name, but I have read your posts. I hope you get your appointment at the NAC very soon. I'm due down there on the 13th of April for an appointment on the 14th. If you happen to be there at that time please feel free to ask for me if you want. I know how worrying the waiting is and I hope the forum has helped a bit.

We are just trying to start up these local support groups so if and when you are ready, please let us know. At the moment there are only three of us and we live in the central belt. It's a fair bit away from Moray, but much closer than London, so you would be very welcome.

Meanwhile, thinking of you and your husband and family and wishing you all the very best.
Title: Re: Scotland Support Group
Post by: georgeturner on March 30, 2015, 03:02:02 pm
Mark,

Gail is coming from Kilmarnock. She has suggested I meet her at 12 o'clock on the 23rd April at Glasgow Central Station. How does that suit you? Let me know if that's OK, we can meet you there or at a nearby cafe.
Look forward to seeing you again.
Hope you are keeping well. 
Title: Re: Scotland Support Group
Post by: Mark McConway on March 30, 2015, 11:09:56 pm
That's fine George.  I have your email so I can get in touch again that way if you like.  I'll pencil the 23rd in and make sure I'm available.

I don't mind driving us to Kilmarnock if that helps Gail.
Title: Re: Scotland Support Group
Post by: georgeturner on March 31, 2015, 01:14:04 pm
Mark,
Gail is happy to  meet in Glasgow for our first meeting then if it is just the three of us we can meet in Kilmarnock for the next one. She has suggested the Lighthouse in Mitchell Street for lunch?
Feel free to e-mail me directly or through the forum.
If there are more people out there who want to, and are able to meet up with us, please post or e-mail me on the forum. We are all prepared to be flexible about locations for future meetings.
Title: Re: Scotland Support Group
Post by: georgeturner on April 24, 2015, 11:58:38 am
We had our first meeting on the 23rd April at the Lighthouse in Glasgow. There are only three of us at the moment - Gail, Mark and George - but if there are any others who are interested just post a reply or e-mail me through the forum and I'll get back to you. We're hoping to meet up again sometime in July.

The meeting was very informal, but it was good to meet with each other, have some lunch, and find out a bit more about how each of us is coping with amyloidosis. None of us had heard of amyloidosis when we were first diagnosed and it's very frightening and you can feel pretty isolated as there is nobody you can talk to about it while waiting for the NAC appointment (thankfully I was advised not to search the internet). We are all doing well at the moment and appreciate the care and attention of all the staff at the NAC.
Title: Re: Scotland Support Group
Post by: spudair on May 03, 2015, 09:22:01 pm
Folks let me introduce myself
My Name is Brian and AL Amyloidosis came into my family Unit (Sept 2012)
I am the husband of the patient (My wife Beth)
Our family consisted of My Wife,Myself,Our 10 year old daughter and a 2yr old foster daughter
While walking our daughter home from school pushing our foster daughter in her pram my wife noticed issues with her breathing trying to keep up with our daughter , she  followed this concern up with a doctors appointment.
The doctors ecg machine highlighted an issue and my wife went on the hospital waiting list
She bounced over the coming 5 months between cardiac,respiratory,cardiac,haematology departments and they had no clue what could be wrong with her (Ayr Hospital)
In February she put perfume on her neck and her skin reacted to this and this took her into hospital
After 3 weeks the bloods , and urine checks stated she may have amyloidosis
However the checks on her biopsy’s showed nothing and came back clear
Ayr were very slow to act and as my wife was a staff nurse in many Ayrshire & Glasgow hospitals she lost faith in the local hospital and arranged to have a check in two Glasgow hospitals
They provided the data that prepared me for what followed.. The system had taken so long
To diagnose her and she was had now reached stage 4 heart failure due to the amyloid damage in her heart. (she also had the trouble in the skin and intestines)
Unfortunately by the time my wife had a name for her condition we were on bumpy ground
We headed south to NAC and she met up with Julian Gilmour .
Over the two days in London we had amyloidosis confirmed and the treatment plan drawn up
The biopsy’s that were clear in Ayr were rechecked in London and found to contain Amyloid
However on returning to Scotland and starting treatment my wife’s heart  was so badly damaged that the chemo just pushed her over the edge and she passed away  on 10 Jun 2013 (age 52)
I miss my wife everyday but my duty now will be to change what was wrong on our journey and  help design a quicker diagnosis path and patient care plan for future patients.
I am currently in meetings with Ayr Hospital and I would like to think by the time i complete this journey the patient plan for amyloidosis patients will be well documented and if you can help me design the plan all the better.
I also informed the hospital whatever we put in place will also be passed through the nhs ombudsman so we can get their input and even relay this to all other hospitals.
I was trying to start my own Scottish support group someday and also collate all accurate world data on amyloid and build a Scottish website to hold the links but also work with Nac so the two sites could work together for the patient.
George,Gail & Mark I have been on the journey as the husband and appreciate that the above is not
Very nice reading for you but I loved my wife dearly and i wish to become involved and help the people that are still around with the trouble.
Beth  had a medical background and had never come across this  in her 35yrs as a nurse
She also worked at the golden jubilee in the cardiac unit and had never seen it so in the heart
It must be very rare.
I now need to get the knowledge of this trouble into the public eye with your help if you will have me on board.
I work within a University and some day I hope to have NAC (Julian Gilmour) at one of our NHS conferences to get the knowledge out there on this trouble.

I only discovered you existed the day you were all meeting up

If Miriam can help I felt bad luck came to our door and wanted
if possible the numbers/stats on female cardiac amyloid in my wifes agegroup (52)
in my head and thinking back to our NAC visit.. cardiac involvement  in female 52 year olds is very rare


hope to hear from you soon

Brian
Title: Re: Scotland Support Group
Post by: Miriam Vered on May 04, 2015, 08:34:23 am
Hi Brian,
Welcome to the forum.
All my condolences for losing Beth. Amyloidosis is rare at age 52, which probably contributed to the delay in diagnosis. Unfortunately your story of "bouncing" between different specialists before amyloidosis is diagnosed is all too common for patients of all ages.


I'll look into the statistics you asked for and get back to you.




 
Title: Re: Scotland Support Group
Post by: georgeturner on May 04, 2015, 11:54:48 am
Hello Brian,

Welcome to the forum. I'm very sorry to hear of the loss of your wife Beth at such a young age. Unfortunately your story of missed/late diagnosis of amyloidosis seems all so familiar and the fact that it was too late to save Beth is so very sad.

I am very interested in the work you are doing in raising the awareness of both the medical profession and the public about the diagnosis and treatment of amyloidosis. I, and I'm sure many others on the forum, would be pleased to help you in any way we can.

You would be most welcome on board our Scotland Group. Both Gail and Mark have AL amyloidosis and I have ATTR amyloidosis. We talked about how we could become more involved as a group. Mark has already some experience in talking to the medical profession.
We planned to meet again in July, but if you would like to meet sooner, I live in Glasgow and I'm retired so available to meet with you sooner if you wish. The others may wish to join us.

Best wishes to you and your young daughters.




Title: Re: Scotland Support Group
Post by: spudair on May 04, 2015, 08:51:28 pm
George, thanks for response, reading it on my phone, I will get in contact when back on desk pc, it's great support and if I can deploy something that helps others and remembers my wife I will feel good, be in touch soon. Brian

Title: Re: Scotland Support Group
Post by: georgeturner on May 06, 2015, 06:06:07 pm
For those of us in the Glasgow area, I have met with the support nurse who runs the Glasgow Myeloma Support Group with Myeloma UK. She is happy for Amyloidosis patients to attend their meetings, some do so already. Although Myeloma is linked to AL Amyloidosis, patients with other types of Amyloidosis would be welcome to attend.

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.
Title: Re: Scotland Support Group
Post by: georgeturner on May 15, 2015, 07:24:42 pm
Additional Meeting.

I am planning to meet with Gail around noon on Tuesday 19th May at Kilmarnock bus station. It's in addition to our planned meeting sometime in July. We'll be having lunch and a general chat and catch up.

Mark and Brian, if you or any others are interested and available, it would great if you could join us.

I'm also hoping to go to the Myeloma UK meeting at the Maggie Centre near the Beatson in Glasgow on Thursday 21st. If you have any questions you'd like me to ask, post or e-mail them to me on the forum.
Title: Re: Scotland Support Group
Post by: spudair on May 18, 2015, 10:27:34 am
George,

Thanks for the invite
I work  (08:30 till 16:30 weekdays)

but in the near future I have holidays Fridays and Mondays during the school holidays
I will try and have a catchup with everyone during this time.

Regards

Brian
Title: Re: Scotland Support Group
Post by: georgeturner on May 18, 2015, 11:29:56 am
Thanks for getting back Brian.
I know some people have to work and you have your daughters to care for too. Maybe we can have our next meeting at the weekend. It would be interesting to learn about how you are progressing with the hospital. It would be great if it led to earlier diagnosis and more awareness of amyloidosis.

All the best.
Title: Re: Scotland Support Group
Post by: spudair on May 21, 2015, 11:02:24 am

George, As I read your Statement you gave me the energy to fight on for action for Patients

>>>It would be interesting to learn about how you are progressing with the hospital. It would be great if it led to earlier diagnosis and more >>>awareness of amyloidosis

I Started out with a great Guy in Ayr Hospital who was going to deliver on earlier diagnosis and more awareness of amyloidosis
However he was head hunted and I am now in someone else's hands and they are delivering nothing.

I have had two chats with the new person at the hospital but have now been written off with no verbal or written closure
I always said after a friendly approach I would close with an ombudsman audit of the path we followed during Beth's trouble.

I have told the hospital to get someone who can deliver onto the case or I bypass the friendly approach and go to the ombudsman

I will update you on the full saga when I get to chat with you.

Brian
Title: Re: Scotland Support Group
Post by: georgeturner on May 22, 2015, 11:56:01 am
Maggie's Centres

https://www.maggiescentres.org/

"Maggie’s offers free practical, emotional and social support to people with cancer and their families and friends. Help is offered freely to anyone with any type of cancer. Simply drop-in at any time - you’re always welcome."

I went along  to the Myeloma UK Group meeting last night at the Glasgow Maggie's Centre, and although I have ATTR Amyloidosis and not AL Amyloidosis, I was made very welcome by both the Myeloma UK nurse running the group and the Maggie's Centre staff. This is a great facility with a warm and relaxing atmosphere.

There are Maggie's Centres around the UK attached to NHS cancer hospitals. There is also a Maggie's Online Centre. I've attached a link to their website. Hope they can help.

Brian, great to meet you there and share our experiences. Take care.
Title: Re: Scotland Support Group
Post by: georgeturner on June 12, 2015, 01:17:39 pm
July Meeting

I thought I'd better start trying to arrange our July meeting. I'm off on holiday 24th of June, followed by an appointment at the NAC 6/7th of July.
I'll be available to meet up from 13th July onward and don't have any preference on where we meet.
Gail, Mark, Brian and the others who have been in contact and anyone else who is interested and available, could you post or email me with dates/times and where you'd like to meet. I'll then try to sort out the most convenient time and place for everyone.

Look forward to seeing you all soon.
Title: Re: Scotland Support Group
Post by: georgeturner on June 15, 2015, 11:33:41 am
July Meeting

Gail is available to meet between the 13th and 24th of July except for the 15th and 22nd and is flexible as to where we meet.
If you would like to meet up, please post or email me with dates/time and where you would like to meet.

Title: Re: Scotland Support Group
Post by: Mark McConway on June 15, 2015, 11:29:53 pm
Hi George,

14th July looks free for me at the moment and any place in Glasgow would also be fine.

Mark
Title: Re: Scotland Support Group
Post by: spudair on June 16, 2015, 10:47:12 pm
Folks,

I am on day shift on 14th July, and on all other weekdays,but if anyone can at some point in the future meet on a weekend I will get to meet everyone eventually (Glasgow ok for me)
Met George in Glasgow last month and feel I have known him all my life.. Great guy

 Think I may have met Mark in London during my wife's diagnosis (5th May 2013)
Title: Re: Scotland Support Group
Post by: georgeturner on June 19, 2015, 06:07:16 pm
The next Glasgow Myeloma Support Group meeting is at the Maggie’s Centre, Gartnavel General Hospital, on Thursday 23 July 2015 at  6:30pm to 8:30pm. The meeting is open to anyone looking for support/information about all types of amyloidosis.
Details -
               http://www.myeloma.org.uk/wp-content/uploads/2013/08/Glasgow-Support-Group-poster-July-2015.pdf
Title: Re: Scotland Support Group
Post by: georgeturner on July 03, 2015, 09:44:46 pm
July Meeting

The plan is to have the July meeting on Thursday 23rd July at the Maggie's Centre, Gartnavel at 6:30. Gail, Brian and myself all plan to be there. Gail has suggested meeting up beforehand for something to eat. If anyone cares to join us let me know and we can arrange where and when.
Mark, if you can't make the 23rd both Gail and I can meet you on the 14th if you like.

If there is anyone else who is interested in meeting up, let me know by posting or e-mail.
Title: Re: Scotland Support Group
Post by: georgeturner 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.
Title: Re: Scotland Support Group
Post by: georgeturner 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.
Title: Re: Scotland Support Group
Post by: Mark McConway 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.
Title: Re: Scotland Support Group
Post by: Maureen 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.
Title: Re: Scotland Support Group
Post by: georgeturner 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
Title: Re: Scotland Support Group
Post by: georgeturner 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.
Title: Re: Scotland Support Group
Post by: Ruth G 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
Title: Re: Scotland Support Group
Post by: georgeturner 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.
Title: Re: Scotland Support Group
Post by: georgeturner 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.
Title: Re: Scotland Support Group
Post by: georgeturner 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.
Title: Re: Scotland Support Group
Post by: Wallace 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.

Title: Re: Scotland Support Group
Post by: georgeturner 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.
Title: Re: Scotland Support Group
Post by: Mark McConway 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. 
Title: Re: Scotland Support Group
Post by: patpinchin 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. :) :) :)
Title: Re: Scotland Support Group
Post by: georgeturner 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.
Title: Re: Scotland Support Group
Post by: Wallace on January 03, 2016, 05:01:49 pm
Thanks for your reply George.  Sorry haven't been back here for a while.

My wife and son are the only diagnosed cases of FCAS2 in the UK.  I think there are less than 20 globally.

The appointment at NAS went well and we are back again in February I believe.

Please do put me on the email list for meetups.

jOhn.

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.
Title: Re: Scotland Support Group
Post by: georgeturner on January 04, 2016, 11:37:25 am
Hi John,
Good to hear that the appointment went well.
I don't have your email address, but I've sent you an email via the forum. If you reply, I can get your email address and add it to the mailing list for the group. I'll be sending out an email to the group to set up the place and time for our next meeting fairly soon. It would be good if you can join us.
Title: Re: Scotland Support Group
Post by: georgeturner on January 10, 2016, 12:43:51 pm
January Meeting

The group will be meeting at the Lighthouse, 11 Mitchell Lane, Glasgow on Saturday the 16th of January.

We'll meet at 11:30 in the Doocot Cafe in the Lighthouse. Take the lift to level 5.

If you would like to join us or if you want any more information, please contact me by email, PM or by post on the forum.
Looking forward to seeing those of you who can make it on the 16th.
Title: Re: Scotland Support Group
Post by: georgeturner on January 18, 2016, 08:08:03 pm
January Meeting Report

Thank you to everyone for coming in to Glasgow on a cold, snowy Saturday. We had a good turn out of nine at the Lighthouse this time. Unfortunately not everyone could make it, but it was good to welcome new member Ruth to the group.
The meetings are very informal, sitting round the table with tea and coffee, getting to know one another, sharing our experiences of amyloidosis and how we are coping with it. I'm pleased to say we're all doing pretty well. We heard some good news from Brian and this set us thinking about how we might develop the group further.
We've provisionally set a time and place for the next meeting. Maureen and Roy, who came all the way over The Rest And Be Thankful, suggested Lomond Shores one Saturday in May. I'll be in touch nearer the time to firm it up and get numbers. Hopefully everyone will be able to meet up next time.

If you would like to join us or want any more information, please post on the forum, or if you send a personal message or email to me through the forum and include your email address I'll add you to the Group Mailing List.
Title: Re: Scotland Support Group
Post by: georgeturner on January 18, 2016, 09:05:05 pm
January Meeting Photograph

Mark, Janice and David, Maureen and Roy
Audrey, Ruth, George, Brian
Title: Re: Scotland Support Group
Post by: georgeturner on January 23, 2016, 11:46:38 am
February Meeting

The Glasgow Myeloma UK Support Group will be meeting on Thursday 4 February, 6.30 pm – 8.30 pm at the Maggie's Centre, Gartnavel Hospital, Glasgow.

Some of our group are planning to be there. Feel free to come along and join us.

Post, email or PM me through the forum for more information.
Title: Re: Scotland Support Group
Post by: patpinchin on January 23, 2016, 04:44:36 pm
Lovely group photo of you all George. Would be nice to be able to put names to faces. I recognise Mark and Audrey but that's all. So pleased your friendly  "gang" continues to thrive and to hear that you are starting to think about about how to develop. Brian's good news was very exciting.  :) :)
Title: Re: Scotland Support Group
Post by: georgeturner on March 16, 2016, 04:20:18 pm
April Meeting

The Glasgow Myeloma UK Support Group will be meeting on Thursday 14 April, 6.30 pm – 8.30 pm at the Maggie's Centre, Gartnavel Hospital, Glasgow.

Some of our group are planning to be there. If you can, come along and join us for tea, coffee and chat. Look forward to seeing you.

Post, email or PM me through the forum for more information.
Title: Re: Scotland Support Group
Post by: georgeturner on May 14, 2016, 02:23:18 pm
May Meeting

The group will be meeting at Loch Lomond Shores on Saturday the 21st of May.

A table has been reserved in my name at twelve o'clock in the Adventure Kitchen on the first floor of the shopping mall. There is a lift if required. It's a very informal meeting for patients, family, carers and friends and a chance to meet and share experiences with others affected by amyloidosis.

If you would like to join us, or if you want any more information about the meeting or the group, please contact me by email, PM or by posting on the forum.

Looking forward to seeing those of you who can make it on the 21st.
Title: Re: Scotland Support Group
Post by: patpinchin on May 15, 2016, 09:15:45 am
George.....your posts about the activities of your friendly Scottish support group are such a joy to read. Your group members must really look forward to the occasions.

I await news from your get to-gethers with interest. There always seem to be new developments on the horizon from North of the border. Well done Scotland!

Enjoy your lunch on Loch Lomond's shores on the 21st.  I cannot think of a more beautiful place to meet at this time of year. Hope you will post a photo too.

Very best regards to all you lovely Scottish friends from the south coast.  :) :) :)
Title: Re: Scotland Support Group
Post by: georgeturner on May 16, 2016, 11:22:17 am
Thank you Pat.

I think the group do enjoy the meetings. I know I do. It's good to be able to meet with others affected by amyloidosis. It's a chance to get to know each other and share experiences about how we are coping.
Apart from visits to the NAC, few if any of us ever get to meet anyone else who has even heard of amyloidosis let alone suffer from it.
Some sufferers don't feel the need for support groups and some are unable to meet up due to their personal circumstances, but for others I would encourage them to meet up. There are several support groups listed on the forum. If there is one near you, why not give it a go, if there isn't one locally, why not start one?
Title: Re: Scotland Support Group
Post by: georgeturner on May 23, 2016, 09:18:25 pm
May Meeting Report

Thank you to everyone who managed along to the meeting at Loch Lomond Shores. It was good to welcome Danny, his wife Marion and daughter Angeline to the group. The Adventure Kitchen staff reserved a table for us and we enjoyed the friendly atmosphere, good food and great views over the loch. We were able to share and learn from our experiences of being diagnosed with amyloidosis from a patient, carer and family member point of view. Many common stories but yet all very different.
 
So far we have had meetings at the Lighthouse in Glasgow, the Falkirk Wheel and Loch Lomond Shores. As some of our members live further north, we decided that we would try and hold the next meeting in September in Perth. We hope that this will make it easier for those from the north to get to the meeting. Dates for when you can come would be helpful, Saturday seems to be the preferred day. I don't know Perth at all, so if anyone can suggest somewhere that we can book to meet up for a bite to eat and a chat, that would be great. Send me your suggestions and I'll try and sort out the meeting.

If anyone is interested in joining the group, post, email or PM me through the forum for more information.
Title: Re: Scotland Support Group
Post by: georgeturner on June 14, 2016, 09:19:57 pm
June Meeting

The Glasgow Myeloma UK Support Group will be meeting on Thursday 23 June, 6.30 pm – 8.30 pm at the Maggie's Centre, Gartnavel Hospital, Glasgow. They welcome patients, family and friends with all types of amyloidosis not just AL

A few of our group are planning to be there. If you can, come along and join us and Lesley, the Support Group Clinical Nurse Specialist, at this informal meeting for tea, coffee, information and chat. Look forward to seeing you.

Post, email or PM me through the forum for more information.

https://www.myeloma.org.uk/events/event/glasgow-myeloma-support-group/#tab3
Title: Re: Scotland Support Group
Post by: georgeturner on August 06, 2016, 12:55:29 pm
August Meeting

The next Glasgow Myeloma UK Support Group meeting will be held on Thursday 25 August 2016, 6.30 pm – 8.30 pm at the Maggie's Centre, Gartnavel Hospital, Glasgow. All patients, family and friends with all types of amyloidosis, not just AL, are welcome to attend.

A few of our group attend regularly and are planning to be there. If you can, come along and join us and Lesley, the Support Group Clinical Nurse Specialist, at this informal meeting for tea, coffee, information and a chat. Look forward to seeing you.

https://www.myeloma.org.uk/events/event/glasgow-myeloma-support-group/#tab2

I'll be trying to set up our meeting in Perth in September through our mailing list. If you would like to join us, send me your email address and I'll add it to our mailing list. Suggestions about where and when you'd be available to meet would be most welcome. I don't know Perth, so if you know of a cafe or restaurant where we can book a table for 10 to 15 people please let me know.

Post, email or PM me through the forum for more information.
Title: Re: Scotland Support Group
Post by: georgeturner on August 28, 2016, 10:33:03 pm
September Meeting
 
The group will be meeting at the Black Watch Castle and Museum, Perth on Saturday the 10th September.

http://www.theblackwatch.co.uk/cafe/cafe-awards/

A large table has been booked for lunch at the Cafe for 12 o'clock. There is plenty to do before and after lunch including the The Weeping Window Poppies sculpture.

It's a very informal meeting for patients, family, carers and friends and a chance to meet and share experiences with others affected by amyloidosis.

If you would like to join us, or if you want any more information about the meeting or the group, please contact me by email, PM or by posting on the forum.

Looking forward to seeing those of you who can make it on the 10th.

Title: Re: Scotland Support Group
Post by: georgeturner on September 14, 2016, 05:41:59 pm
September Meeting Report

Thank you to everyone who managed along to the meeting at the Black Watch Castle and Museum in Perth. It was good to welcome Ian to the group. It was nice to catch up with everyone over a relaxed lunch in the Cafe. We then visited the Poppies Weeping Window display to mark the centenary of the First Word War.

We decided the next meeting will be in Edinburgh in January, Saturday seems to be the preferred day. Ruth will try to find somewhere that we can book to meet up for a bite to eat and a chat. If anyone else can suggest somewhere, that would be great. Send me your suggestions and I'll try and sort out the meeting.

If anyone is interested in joining the group, post, email or PM me through the forum for more information.
Title: Re: Scotland Support Group
Post by: georgeturner on September 14, 2016, 05:50:09 pm
Scotland Support Group at the Black Watch Castle in Perth
Title: Re: Scotland Support Group
Post by: Mark McConway on September 17, 2016, 12:45:43 pm
Just wanted to add my thanks to those of others for George's continued enthusiasm in organising our Scotland Support Group meetings.  What started off as a single meeting between three of us about 18 months ago has grown into a warm and engaging group meet a few times a year - with partners\ family members coming too.

If you don't have an Amyloidosis Patient Support Group in your area, maybe think about starting one.  Imagine it  as nothing more than arranging a conversation with a small number of people who have a shared interest.  You can run it any way you want.  We decided that the group is more likely to want to meet if it doesn't involve committees, paperwork etc (although that might be necessary if you want to do fundraising etc).

We move the venue about each time we meet and that keeps it fresh too.  Go to nice places and your spirits get a lift as well. 

For me, personally, the biggest single benefit of the group is just knowing that others have been where you are and they understand what you're going through - or have been through.  That has value!
Title: Re: Scotland Support Group
Post by: georgeturner on October 21, 2016, 03:27:53 pm
October Meeting

The next Glasgow Myeloma UK Support Group meeting will be held on Thursday 27 October 2016, 6.30 pm – 8.30 pm at the Maggie's Centre, Gartnavel Hospital, Glasgow.

https://www.myeloma.org.uk/events/event/glasgow-myeloma-support-group/

Myeloma UK welcome patients, family and friends with all types of amyloidosis, not just AL, to attend. A few of our group go along regularly and are planning to be there. If you can, come along and join us and Lesley, the Support Group Clinical Nurse Specialist, at this informal meeting for tea, coffee, information, sharing and a chat. Look forward to seeing you.

I'll be trying to set up our next Scotland group meeting in Edinburgh in January through our mailing list. If you would like to join us, send me your email address and I'll add it to our mailing list. Suggestions about where and when you'd be available to meet would be most welcome.

Post, email or PM me through the forum for more information.
Title: Re: Scotland Support Group
Post by: georgeturner on December 16, 2016, 05:54:13 pm

January Meetings

The next Glasgow Myeloma UK Support Group meeting will be held on Thursday 12 January 2017, 6.30 pm – 8.30 pm at the Maggie's Centre, Gartnavel Hospital, Glasgow.

https://www.myeloma.org.uk/events/event/glasgow-myeloma-support-group/

The Glasgow Myeloma UK Support Group welcome patients, family and friends with all types of amyloidosis, not just AL, to attend. A few of our group go along regularly and are hoping to be there. If you can, come along and join us and Lesley, the Support Group Clinical Nurse Specialist, at this informal meeting for tea, coffee, information, sharing and a chat. Look forward to seeing you.

I'll be trying to set up our next Scotland Support Group meeting in Edinburgh sometime in January through our mailing list. If you would like to join us, send me your email address and I'll add it to our mailing list. Early Suggestions about when you'd be available to meet (usually a Saturday) and any suitable places in Edinburgh where we can book a table to eat and chat would be most welcome.

Post, email or PM me through the forum for more information.

Meanwhile I wish everyone a Merry Christmas and a Happy, HEALTHY New Year.

Lang may yer lum reek.
Title: Re: Scotland Support Group
Post by: georgeturner on January 09, 2017, 11:28:41 pm
January Meeting of the Glasgow Myeloma UK Support Group

The Glasgow Myeloma UK Support Group Meeting will be held on Thursday 12 January 2017, 6.30 pm – 8.30 pm at the Maggie's Centre, Gartnavel Hospital, Glasgow.

 https://www.myeloma.org.uk/events/event/glasgow-myeloma-support-group/

They welcome patients, family and friends with myeloma and all types of amyloidosis, not just AL, to attend. A few of the Scotland Amyloidsis Group go along regularly and are hoping to be there on Thursday 12 January. If you're in the Glasgow area and would like to meet us, come along and join us and Lesley, the Myeloma UK Support Group Clinical Nurse Specialist, at this informal meeting for tea, coffee, information, sharing and a chat.

Post, email or PM me through the forum for more information.
 
Look forward to seeing you.
Title: Re: Scotland Support Group
Post by: georgeturner on January 11, 2017, 09:58:36 pm
January Meeting of the the Scotland Amyloidosis Support Group


The group will be meeting on Saturday 21st January at the Fruitmarket Gallery Cafe, Edinburgh. Check out their website and menu
 -   http://www.fruitmarket.co.uk/cafe/

Thanks to Ruth for arranging and booking the Cafe (Booked in Ruth's name).
The table is booked in the Fruitmarket Gallery Cafe at 12.30 on Sat 21st for 10-12 people. Gallery address is 45 Market Street and really is right behind Waverley Station (opposite City Art Centre).

If you haven't already done so and would like to come along, please let us know so that we can try to book extra seats at the Cafe.

It's a very informal meeting for patients, family, carers and friends and a chance to meet over a bite to eat and to share experiences with others affected by amyloidosis. Or just have a blether and catch up.

If you would like to join us, or if you want any more information about the meeting or the group, please contact me by email, PM or by posting on the forum.

Looking forward to seeing those of you who can make it to our first Meeting of 2017 on the 21st in Edinburgh.
Title: Re: Scotland Support Group
Post by: georgeturner on January 12, 2017, 01:40:57 pm
CANCELLED January Meeting of the Glasgow Myeloma UK Support Group

Sorry for the late notice, but I've just found out that the meeting today has been cancelled as the weather does not look too good this evening.
Take care and hope to meet up in Edinburgh or at the next Myeloma UK meeting.
Title: Re: Scotland Support Group
Post by: georgeturner on January 27, 2017, 03:48:20 pm
January Meeting Report

Thank you to everyone who managed along to the Edinburgh Meeting.

Special thanks to Ruth for booking the Fruitmarket Gallery cafe for us. It was a good choice, close to Waverley Station and Princes Street, but away from the crowds, and they served a good Cullen Skink. Sorry, I can't comment on the rest of the food because it was everyone's choice, but the rest of the menu offered other tempting options. Not so many managed along this time. It's difficult to get a date and venue to suit everyone as some of us will have a fair bit to travel no matter where we choose, but we do try to vary the location to suit.
 
So if anyone is visiting Edinburgh at anytime and wants to find a quieter place to eat, give the Fruitmarket Gallery cafe a try. It's in a small Gallery with a cafe, bookshop, some interesting exhibits and free entrance.

Our meetings are very informal and all about providing patients their family, carers and friends with a rare opportunity to meet others in a similar situation over a bite to eat, and to share experiences about being affected affected by amyloidosis. Or just to make new friends and have a blether, or catch up up with old friends.
Those of us who were there decided to hold the next meeting in May in Kilmarnock. Hoping that Gail will be able to arrange a good place and date for us to meet. More to come on that nearer the time. Meanwhile check your diary and keep your options free for any Saturdays in May you can manage.

If anyone is interested in joining the group, post, e-mail or PM me through the options on the forum for more information.
Title: Re: Scotland Support Group
Post by: FionaRitchie on February 09, 2017, 11:28:40 am
I would love to join the Scotland support group if possible? I'm not a patient but I am doing my best to care for my brother who has Cardiac AL Amyloidosis and lives in England. I would love to meet others with experience of this rare condition as it may help me to help my brother.
I live near Maybole in South Ayrshire. Thanks
Title: Re: Scotland Support Group
Post by: georgeturner on February 09, 2017, 03:49:20 pm
Hi Fiona,

You are most welcome to join us. We have an e-mail list which we use to arrange meetings and to keep in touch. Our next meeting just happens to be planned for May in Kilmarnock. We have 2 members from Ayrshire. If you don't want to send your e-mail on the forum, you can PM me and I'll add you to our list.
Some of our group go along to the Glasgow Myeloma Support Group. They can answer your questions on a free helpline, and they have booklets on AL. I'll be posting information about the next Myeloma Support Group meeting fairly soon. Worth coming along to if you can.

Hope to see you soon.
Title: Re: Scotland Support Group
Post by: georgeturner on February 09, 2017, 04:20:45 pm
March Meeting of the Glasgow Myeloma UK Support Group

The next Glasgow Myeloma Support Group Meeting is on Thursday 2 March 2017 from 6.30 pm to 8.30 pm at -

Maggie’s Centre,
Gartnavel General Hospital,
1053 Great Western Rd,
Glasgow,
G12 OYN

They are happy to welcome people with all types of Amyloidosis not just AL. A few of us from our group go along regularly, so if you would like to join us please do.
 
Regards,
George


Title: Re: Scotland Support Group
Post by: Linda Wolfe on March 13, 2017, 07:50:57 pm
Happy to be kept on the email list but am unlikely to make it to the May meeting in Kilmarnock.  However, if I can be of any help locally (Perthshire) to anyone else involved in their own care for AL Amyloidosis or the care of a friend or relative, please get in touch.  I was diagnosed in 2014, had six months of chemo etc and am now in remission.  I lead a full life and just need the monthly blood samples and annual check-up at NAC.  I am hugely grateful for the care I have received from medics and family alike.  Linda Wolfe
Title: Re: Scotland Support Group
Post by: georgeturner on April 27, 2017, 07:08:22 pm
May meetings

The next Glasgow Myeloma UK Support Group Meeting is on Thursday 4 May 2017, 6.30pm – 8.30pm
at Maggie’s Centre, Gartnavel General Hospital, 1053 Great Western Road, Glasgow.
Myeloma is closely linked to AL Amyloidosis but the group welcome people affected by all types of Amyloidosis. Some of our group have been going along and been made very welcome. See link below.
https://www.myeloma.org.uk/wp-content/uploads/2013/08/Glasgow-Support-Group-May-2017.pdf

Has anything been arranged yet for our own May group meeting in May? I won't be available 13th, but will try to make it to the meetings depending on health.

Title: Re: Scotland Support Group
Post by: Mark McConway on April 29, 2017, 09:16:41 pm
George,

I'll pick up the trail with our group and see what's what as regards the meet-up.  Would a lift from your home be helpful to you?

Hope you're keeping well.

Mark
Title: May Meeting - Report
Post by: Mark McConway on May 14, 2017, 08:32:42 pm
Yesterday, our group met at a lovely venue - Franklin and Sloane - in Kilmarnock, East Ayrshire.  We've been deliberately using different place around Scotland to spread the travel burden as equitably as we can.  This has the added benefit of keeping things fresh and interesting for all of us.  We're visiting places that we may not have seen before and that's been good for keeping us motivated to attend, if we needed any, that is!



Although George, Danny and Fiona couldn't make it, we were joined by Anne and Claire who brought with them stories of their own journeys with Myeloma too.  These were interesting and, in common with some of our other experiences, shocking at times.  From listening to others, we're gaining insight and sharing information on what has been helpful - at an individual level - in providing comfort whilst treatment is taking place.  Things that came up in discussion ranged from long delays in getting a diagnosis of Amyloidosis through to the use of complementary medicine and a lot in between.

Our next meeting will be in Glasgow in mid October.  If you would like to join our group, just get in touch and we'll add you to our email list to keep you updated on dates and times of meetings.  We are a friendly bunch and are happy for you to bring family members or friends with you when we meet up.

Mark
Title: Re: Scotland Support Group
Post by: 1957 on June 11, 2017, 05:44:17 pm
I would like to join the group and hopefully meet with you all in October. I had the pleasure of meeting Ann, Claire and Brian at a Myeloma support meeting in February with my partner Robbie. I am about to start another course of treatment with Revlimid and Dexamethasone this time. I have had 3 good years of remission after CTD and then Velcade.
Best wishes
Fiona Taylor
Title: Re: Scotland Support Group
Post by: georgeturner on June 16, 2017, 11:40:15 am
June Meeting

The next Glasgow Myeloma UK Support Group Meeting is on Thursday 29 June, 6.30pm – 8.30pm at Maggie’s Centre, Gartnavel General Hospital, 1053 Great Western Road, Glasgow.
Myeloma is closely linked to AL Amyloidosis and the group welcomes people affected by all types of Amyloidosis. Some of our group have been going along and been made very welcome. It's a very informal and friendly group. If you are interested, come along and join us for tea/coffee and a chat.
See link below.

https://www.myeloma.org.uk/events/event/glasgow-myeloma-support-group/
Title: Re: Scotland Support Group
Post by: RabC on September 06, 2017, 05:32:50 am
Not new to Amyloidosis was diagnosed 2007 but still not sure which type if any would be nice to meet other people it times quite a lonely disease when you have know one to talk to about it. I from Cupar, Fife.

Have been ill for a long time and collected a few along the years but amyloid is different and less people to talk to.

Not been to. London in a couple of years now due to other health problems. Should really get back down but after last consultation there didn't seem to be any need. The answer was we have no idea how you got it we don't know what type you have but your levels are good just keep with what you are doing. Sometimes an answer would be good, thanks for reading Rab.
Title: Re: Scotland Support Group
Post by: georgeturner on March 29, 2018, 04:26:45 pm
April Meeting

The next meeting in Glasgow of the Myeloma UK Support Group is on Thursday the 19th of April 2018 from 6.30pm – 8.30pm at the Maggie’s Centre, Gartnavel General Hospital, 1053 Great Western Road, Glasgow G12 0YN.

Myeloma is closely linked to AL Amyloidosis and this group welcome people affected by all types of Amyloidosis. Some of our group have been going along and been made very welcome. So, if you are in the Glasgow area and the date and time are suitable, why not come along and join us?

See attached link for more information.

https://www.myeloma.org.uk/how-we-can-help/meet-others/myeloma-support-groups/find-a-support-group/
Title: Re: Scotland Support Group
Post by: Linda R on April 07, 2018, 08:47:55 pm
Hello George,

Thank you for the information. It was so nice to meet you at the last Myeloma UK Support meeting in November. I shall be in London next week, for my first visit to the NAC, but should be back in time for the meeting.

Please also add me to the group. I have had a busy few months since arriving back in Scotland, but feel now that I can devote some time to getting to know other people here.

Linda
Title: Re: Scotland Support Group
Post by: Mark McConway on April 21, 2018, 10:24:35 am
Hi,

Just wanted to let people know that our Scottish Amyloidosis Patient Support Group is having its next informal meet-up at The Fruitmarket Gallery Cafe beside Waverley Station in Edinburgh, at 1200 on Saturday 28th April 2018.

If you haven't already come across the group - and would like to join us - we'd be really happy to see you.  We started out as a group of three in 2014 and have grown to over 20 members, not including relatives, who are also welcome to join us. 

The format is completely informal.  We share stories, get to know people who've gone through similar experiences as our own - and just give one another some support through chatting.  Our members have a variety of types of Amyloidosis so it's quite possible that you'll meet someone who knows exactly what you might be going through.  If you are maybe not well enough to attend - but would like a family member to come along - they'd be welcome too.

If you want to be included on our email list - and\or want to come along next week - drop me an email at mcconway.mark@gmail.com

Mark

Title: Re: Scotland Support Group
Post by: pgarrud@me.com on April 23, 2018, 07:16:38 am
Hi Mark:

I am based in Edinburgh, about 2 miles from Waverley Station.

I have what my cardiologist named as a “working diagnosis” of amyloidosis. As it happens, I have my first 3-day appointment in London the following week: 2 - 4 May.

I would love to (try to) attend the get-together this Saturday. Thought I would ask in public in case it might be inappropriate since I haven’t yet been properly diagnosed.

Pam
Title: Re: Scotland Support Group
Post by: Mark McConway on April 24, 2018, 12:02:43 pm
Hi Pam,

You'd be more than welcome to meet up with us.  If nothing else, we might be able to tell you a little of what to expect at the NAC.

Just drop me an email on mcconway.mark@gmail.com to let me know if you'd like to come.

Kind Regards


Mark
Title: Re: Scotland Support Group
Post by: Mark McConway on April 28, 2018, 07:33:13 pm
Today, our Scottish Amyloidosis Patient Support Group met up in Edinburgh at the Fruitmarket Gallery Cafe near Waverley Station.

Our numbers are continuing to grow and, although not everyone can make it to every meet-up, we always enjoy meeting fellow-patients.  I'd encourage people in other areas to think about forming a group too.  Being able to talk to other people who have, perhaps, travelled the same route as you, is genuinely uplifting.

It was great to see our new members - Pam (and husband Trevor), Kristian (and partner Nicolle) in person.  As ever, we shared stories and had a few laughs too.  Ours is an easy group to fit into so, if you're anxious about meeting other patients, don't be!  You'll be made most welcome if you want to join us at the next meet-up in the summer.

As a group, we also know that some of our members have been under the weather at the moment - some more seriously than others.  You know who you are.  We all send our love and strength and are willing you towards recovery.  Keep strong!

Kind Regards to All!

Mark
Title: Re: Scotland Support Group
Post by: patpinchin on May 02, 2018, 04:50:20 pm
 
Hi Mark,

 I have been enjoyably reading about the activities of your amazing Scottish support ever since day 1 several years ago. You seem to have the prefect recipe for a successful amyloidosis support group for patients and their families with different types of the disease.

The Scottish Amyloidosis support group has to be the strongest most successful support group in the country. Always so very good to read about your activities in different locations in southern Scotland. Pleased to know you all had such an enjoyable lunch/time in Edinburgh, my second favourite fine Scottish City. My favourite is Glasgow. Big fan of Kelvingrove and the  School of Art with the
C Rennie McIntosh Exhibitions, in art and furniture. As a Glaswegian yourself, I know you will share my love of Glasgow.  :)

There are two quite newly diagnosed Scottish patients, one living on the edge of the Highlands, the other a Shetlander who would probably also benefit from joining your group. Currently they are both receiving treatment but if all goes well it might be worth considering contacting them if they would like that to happen. Just let me know if you think it might be possible to include them in any way at all to ask if they would be interested and willing. The daughter of one of them is a member of this forum, so she might see your post. I know her a little and the daughter of the Shetlander too, so could contact them if you wish and think it’s a good idea.

More amyloidosis support groups are badly needed across the country. If I did not have oral amyloidosis with such distressing symptoms which mean I find talking/conversation far too unmanageable, I would have started a support group here in Dorset. The need is as you rightly is so say well worth considering for anyone who feels they can open a support group in whatever way they are able to.

Good luck and thank-you to anyone who tries to follow the fine example of the Scottish support group. :)
Title: September Meeting
Post by: georgeturner on September 02, 2018, 08:18:36 pm

The next meeting in Glasgow of the Myeloma UK Support Group is on Thursday the 6th of September 2018 from 6.30pm – 8.30pm at the Maggie’s Centre, Gartnavel General Hospital, 1053 Great Western Road, Glasgow G12 0YN.

Myeloma is closely linked to AL Amyloidosis and this group welcome people affected by all types of Amyloidosis. Some of our group have been going along and been made very welcome. So, if you are in the Glasgow area and the date and time are suitable, why not come along and join us?

See attached link for more information.

https://www.myeloma.org.uk/help-and-support/support-groups/glasgow-myeloma-support-group/
Title: Re: Scotland Support Group
Post by: Mark McConway on September 15, 2018, 10:53:03 pm
Today, we had our 10th meeting of the Scottish Amyloidosis Patient Support Group in the centre of Falkirk.  I think that, after nearly 4 years at it, it is probably fair to say that we have a flourishing, supportive group.  It's nice to see that people still want to be a part of this - and actually see the benefit of simply chatting.

Our discussions covered everything from symptoms being experienced, attitudes of GPs, hospital medics, perceived changes at the NAC and holidays, families, work... and everything in between.  What started as a hesitant meeting of strangers a few short years ago has evolved into the warm, friendly circle of support that is was meant to be.

Sadly, we have seen the passing of both Danny and Pam this year but hopefully our group can still be of some assistance to their families if they'd like to join us in the future.

All the best

Mark
Title: Re: Scotland Support Group
Post by: georgeturner on September 19, 2018, 06:16:25 pm
Thanks Mark,
A very enjoyable and supportive meeting. It was great that Jude Leitch from ARC UK came along and provided us with some useful information. Hopefully Jude will come along to some of our further meetings.
I thank you too, for taking over the organisation of our meetings. To anyone who is interested in joining us, Mark is the person to contact. I'm still available to contact, but due to deterioration in health, Mark is the main contact. 
Title: Re: Scotland Support Group - Jan 2019 Meeting Report
Post by: Mark McConway on January 26, 2019, 08:29:44 pm
Glasgow's WEST Brewery and Restaurant was the venue for our 11th Meeting and lunch.  In total, there were 19 of us in attendance, including partners, carers and people who have lost someone close to Amyloidosis.  The remarkable thing about these meet-ups is that, no matter what people are enduring individually, they are giving support to others in a relaxed and friendly atmosphere.

Today's mix was almost a 50-50 split between new members and 'regulars'.  As our numbers are growing, we get the opportunity to meet even more, genuinely lovely, people whose paths may not have crossed with ours in other circumstances.  We come from a variety of backgrounds but have been united by this particularly unusual disease.  The friendships created - and the care that flows from them - are true positives - if you are searching to find any - from being an Amyloidosis patient in this part of the country.

On the way out of the restaurant, we asked a young man to drop the pile of wood he was carrying to take our photo.  He was brilliant; a Glaswegian with split-second wit that got the best out of us for the photo. 
Title: Re: Scotland Support Group - Pitlochry Meet Up Report for 13th April 2019
Post by: Mark McConway 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!

Title: Hello to Scotland Support Group
Post by: sandra.quinn 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
Title: Re: Scotland Support Group
Post by: Mark McConway 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
Title: New member
Post by: Gillcraig 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
Title: Re: Scotland Support Group
Post by: Mark McConway 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

Title: Re: Scotland Support Group
Post by: sandra.quinn 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
Title: Re: Scotland Support Group
Post by: sandra.quinn on October 07, 2019, 10:30:57 am
Dear all,

I was wondering whether there was anyone in the Scotland Support Group (a carer/family member) who would like to be an author for the next edition of AL amyloidosis Matters. I would really appreciate hearing from carers who are interested in contributing.

To get in touch email me at sandra.quinn@myeloma.org.uk

best wishes,

Sandra Quinn