Scotland Support Group

[Wallace]

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.

[georgeturner]

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.

[georgeturner]

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.

[georgeturner]

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.

[georgeturner]

January Meeting Photograph

Mark, Janice and David, Maureen and Roy
Audrey, Ruth, George, Brian

[georgeturner]

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.

[patpinchin]

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. 

[georgeturner]

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.

[georgeturner]

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.

[patpinchin]

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. 

[georgeturner]

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?

[georgeturner]

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.

[georgeturner]

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

[georgeturner]

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.

[georgeturner]

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.