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.