Author Topic: New Support Groups  (Read 3449 times)

Lynnedixon

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  • Posts: 14
  • Reason for joining: Patient in remission from AL Amyloidosis
  • Diagnosed: June 2015
New Support Groups
« on: July 22, 2017, 08:07:55 pm »
Re: South West Support Group

Hello all

Due to the distances involved, it was decided to have two groups in different locations.

The first group which is now called Avon Somerset and Wiltshire Group met on June 29th in Bath, this went very well, we were only a small group but are expecting a few more to join us for the next meeting on Tuesday 26th September. The venue is the George Inn, Mill Lane, Bath BA2 6TR and we will be meeting lunchtime at 12:30pm

The second group is now called Devon and Cornwall Group. Our first meeting is Saturday 12th August. The venue is The Devon Hotel, Old Matford Lane, Exeter EX2 8XU and we will be meeting lunchtime at 12:30pm

If anyone is interested in joining us at either of these locations, all are welcome, then please contact me via the forum, email lynnedixon53@gmail.com or by phone 07863 294102.

Thank you
Regards
Lynne

anna

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  • Posts: 32
  • Reason for joining: patient
  • Diagnosed: 2 years ago approx
Re: New Support Groups
« Reply #1 on: August 07, 2017, 11:44:09 am »
Hi Lynne so glad to find a group near me I live in Bristol. I have just been diagnose having been feeling unwell for years. Im waiting to see what treatment I will need but should know by the meeting in September so would love to come if I'm well enough  .  Looking forward to your reply      Anna

Lynnedixon

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  • Posts: 14
  • Reason for joining: Patient in remission from AL Amyloidosis
  • Diagnosed: June 2015
Devon and Cornwall Support Group Meeting - Important
« Reply #2 on: August 11, 2017, 11:29:38 am »
Hi all

I am really sorry but I've unfortunately had to reschedule the meeting that was due to take place tomorrow, Saturday 12th August at The Devon Motel in Exeter. This is due to my being full up with a very heavy cold and I would not want to pass on my germs to anyone.
Also we have had some bad news within the family so everything is up in the air at the moment.
I'm looking at the moment to reschedule this meeting to the beginning of October (September is very busy) I will post again once a date has been decided.
Apologies again as this had been planned for a while and we were looking forward to meeting up with others.

Kind regards
Lynne


Lynnedixon

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  • Posts: 14
  • Reason for joining: Patient in remission from AL Amyloidosis
  • Diagnosed: June 2015
Re: New Support Groups
« Reply #3 on: August 11, 2017, 11:35:29 am »
Hello Anna
Thank you for getting in touch, I'm sorry this is because of your diagnosis. If you'd like to text me your phone number then I'll give you a call if that's ok.
My number is 07863 294102.

Kind regards
Lynne

anna

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  • Posts: 32
  • Reason for joining: patient
  • Diagnosed: 2 years ago approx
Re: New Support Groups
« Reply #4 on: August 19, 2017, 07:48:36 pm »
Thank you Lynn sorry you are unwell I will text you my number   

patpinchin

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  • Posts: 603
  • AL - extensive in skin. mouth + palatal nerves '04
Re: New Support Groups
« Reply #5 on: August 23, 2017, 06:51:32 pm »
Hi there to all members of the South West support group.

I have only just discovered your group! So very pleased to have found an amyloidosis support group in the south west..
I don't often look at the messages in the support group thread, because I have oral amyloidosis so am unfortunately unable to participate in person though I do read the NAC newsletter items about the activities of support groups which are always interesting and appealing.

I live west of Poole in Dorset, on the eastern extremity of the south west. NAC patients are very widely spread geographically. I know there are other amyloidosis sufferers in Dorset as my Haematologist at Poole Dr Jack has told me he has about 10 amyloidosis NAC patients.
So far you do not appear to have any members from Dorset? I would love to join your group if possible please. If I could talk without distress and socialise I would have started a support group here in Dorset many years ago.

Whilst I am too unwell to attend meetings or socialise, if there is any way in which I could  be involved with your group, I would appreciate it very much. This disease is isolating at the best of times and even more so when talking is as distressing as it is for me. 

I don't have an iphone so if you don't mind contacting me in writing it's easy through this forum,  or if you have a Facebook account through Messenger or via Twitter. If anyone would like my email address please send me a personal message through the message facility of this forum or via Messenger.

Thank-you.  :)
« Last Edit: August 25, 2017, 11:13:05 am by patpinchin »
Pat

Seapro

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  • Posts: 1
  • Reason for joining: Interested in trials.
  • Diagnosed: Swindon November 19
Re: New Support Groups
« Reply #6 on: March 10, 2020, 08:09:49 pm »
Hi, I live just south of Swindon, just been diagnosed as al , so looking for support group in south west, is there anyone out there.