National Amyloidosis Centre Patient Forum
Amyloidosis => Local Support Groups => Topic started by: georgeturner on February 26, 2015, 12:24:15 am
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It's great to have the forum and to be able to support, share and 'meet' with other members online. I've found this very helpful and the support and advice from others invaluable.
I know we are all over the country and abroad too, but would any other members like to be able to meet up with each other locally. Perhaps just for a coffee, and to get to know each other and have a chat.
I don't know how easy it would be to organise. Perhaps you could set something up or suggest something Miriam, to allow interested members to get together.
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I was thinking along the same lines. The forum would be a useful tool to allow people to make contact and arrangements to meet. I will discuss ways of setting this up with Miriam.
In the meantime can anyone who is interested respond to this post indicating the area in which they live?
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Good ideas George and John.
Let's see how much interest there is in this, then we can raise the issue with the NAC staff and UKAAG.
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I would be very interested. I live in Nottinghamshire.
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Whilst sadly I could not participate in a support group myself because it's so excruciating to talk, I look forward to the day when a local amyloidosis support group meeting could be organised. It would be of so much benefit to sufferers and carers and far reaching advantages beyond group meetings. :)
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I live in Glasgow. I'd be interested in meeting up with others. I only know two other patients who live in Scotland. I'm sure there are others. Maybe we could start with groups covering larger areas and, if they are successful, become more local.
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I think this is a sound idea and might also help to engage GP involvement too.
If the 'umbrella' group was properly constituted, it strikes me that it would be able to attract funding from The Big Lottery -Awards for All etc to assist in developing awareness\ holding the local meetings and perhaps funding things like transport to the national Patient and Family Info Day in London.
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I would be interested. I know of 3 people who attend the MRI in Manchester who also attending London (obviously I suppose!) - I guess the people who go to the MRI don't live that far away.
I know this is such a long shot away but Dr Chris Steele has postings on FB - I do keep messaging the TV company about Amyloid and for them to publicise it. I don't hear back but every time I see a posting I send them a nice message. As I say probably wont get me anywhere but its worth it and costs nothing but a few seconds of my time to keep reminding them that more recognition needs to be made of this disease!
Thanks
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My wife and I attend the christie in manchester and would be interested in a local group we live in stockport
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I have found the local press more interested than National media. The are quite keen to write up local people's fundraising stories with a photo. You have to be careful they don't re-interpret anything you send them as they sometimes write incorrect information about the disease, eg: calling it cancer and other misinformation. That does Amyloidosis no favours. The Lady published Michael York's story a while ago and his treatment in the US. Amazingly they did no research on how the disease is diagnosed and treated here. The NAC was not even mentioned! I wrote to the Editor to say how disappointing that was since the NAC is so highly respected not just in the UK but world wide. They did not reply. I have also tried the National press........loads of publications but again no interest. However, as you say Lesley, we must keep trying.
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I would be interested in a local support group. I live in Chester so Manchester,Liverpool, North Wales is easy(ish) for me to acres.
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I am interested in a local support group. I live in Kilmarnock and would like to get to know other people with Amyloidosis in this area. I only know two in Scotland but there are many others.
Gail Hogg
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I would certainly be interested in playing a part in a support group but am not well enough to attend meetings. Very willing to do any administrative work. Such groups would meet a great need I feel.
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Hi all
I think a local support group would be great so we can all share our experiences and support each other, I live in Cheshire seems there are a few of us in the area or maybe even to organise a meeting one evening at home or a get together to get to meet one another obviously anybody who is well enough to meet, think we all need to share some ideas of making people aware of the illness as you mention amyloidosis and the majority of people say I have never heard about this illness including many nurses I have spoken too at the hospital I attend.
Ellie
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Hi
We would definitely be interested in a support group, we're a minority so we need to help each other. We live in Romford, Essex.
Jan & Mike
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We live quite near to London so a London Group might be a good idea and within reasonable commuting distance for quite a lot of people.
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Hi.... I would like to set up a local support group in Colchester Essex.....and surrounding areas. I was diagnosed with Cardiac Amyloidosis Feb 14 at 49 years of age.
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It's worth remembering that Myeloma UK runs a number of local support groups. I know that there is one in Central London and there will be others. Clearly most people attending them will have Myeloma but there seems to be no reason why those with AL Amyloidosis could not attend too as it's a related disease. And some will have both conditions. It would be a good way of discussing treatments/side effects as they are basically the same for both conditions. Just a thought. Maybe MUK should publicise this more?
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Hi, I'm in SW London and I'd be interested.
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I think Annone's idea is a good one. Building on an established group that is already well resourced and strong seems to make very good sense. The two diseases are related and as Annone says many amyloidodosis patients have myeloma too. Would it be a good move for an amyloidosis sufferer or carer who knows of such a group in their local area and is interested in liaising with them to make an approach? Myeloma UK does much good work for Amyloidosis.
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Would be very happy to join a London-based group. Count me in. I have lots of questions and would love to pick the brains and knowledge of others with more experience of Amy than a newbie like me.
Drinks on me :-)
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Hi All,
As people have mentioned, Myeloma UK run support groups in around 60 locations, and they welcome participation of patients with AL amyloidosis, together with myeloma patients, as the conditions are related.
David and Linda who posted here recently might be interested in looking into the London groups.
See http://www.myeloma.org.uk/how-we-can-help/meet-others/myeloma-support-groups/ (http://www.myeloma.org.uk/how-we-can-help/meet-others/myeloma-support-groups/)
for information.
If anyone is interested in being an organiser for a group just for amyloidosis or for non-AL amyloidosis, please let me know so I can add your contact details to a flyer I'm preparing for distribution at the NAC.
Right now the flyer will just mention contact details for the amyloidosis patient groups that are starting up in Scotland and Manchester
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Great. Thank-you for looking into that. :)
I feel sure that AL Amyloidosis patients being welcomed into an established MUK could really help in the absence of a specific AL group. With a sufficient number of interested AL patients a separate group could be established over time. :)
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Hi
I contacted the local Myeloma group in my area to make enquiries to set up an amyloidosis support group in and around Colchester in Essex but no one has got back to me Miriam..... I am willing to try again as I am sure there must be others in my area with Amyloidosis. I am happy for you to use my details on your flyer
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For those living in London and nearby, shall we arrange a meetup? From a purely selfish point of view I would very much like to meet with others and get the benefit of their experience in terms of what to expect in the future (near and not so near ....), advice etc etc.
If anybody is interested, maybe post here and we can aim to sort out a date/venue? Either in central London or alternatively near the Royal Free? I had in mind a date in mid-May sometime? .....
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Hi All,
Attached is the final version of the flyer soon to be printed for distribution at the NAC.
I hope that this will help to get the groups started.
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Perfect Miriam, succinct, to the point and enhanced by the photo of the good looking Scottish trio!
I hope their group will succeed in its aims and that will encourage more groups to open nationwide.
Good Luck everyone. :)
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Hi Miriam,
Thanks to you and Beth for the good work on the flyer.
I'm just back from my Haematology appointment and I was talking to the Myeloma support nurse there about letting others know about our Amyloidosis Support Groups. She was very willing to display our flyer at the support group she runs with Myeloma UK. She has some Amyloidosis people who attend already and would be happy for others to attend their meetings, so perhaps we can reach out to some others with the flyer.
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.
I have her email address and I will email the link to the flyer.
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Hi JellyBabyJan, My wife Cheryl and I live in Horsham, West Sussex so not a million miles away from you. Cheryl has the same condition as your husband and on the same organs, except with Cheryl she also has it on gastrotract which stops us from going out most days. Cheryl was diagnosed in 2011 and at present is very stable and we manage, like most on a daily basis. That's my introduction over, I would join the group as it would be great to meet overs if only for a chat.
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Brian and I as part of the Scotland Support Group have just attended an informal Myeloma UK reception to mark the opening of their new office in Edinburgh and to learn about the growth of their organisation.
Both Eric Low their Chief Executive and a Myeloma patient gave inspirational speeches and we got a chance to meet with some of the staff and patients.
They were very encouraging about the NAC efforts to try and set up Local Support Groups for amyloidosis, and they already have a link to the NAC flyer on their website, and details of contacts at the bottom of the Myeloma Support Groups Infosheet -
http://www.myeloma.org.uk/wp-content/uploads/2013/09/Support-Groups-14-May-2015.pdf
They have also offered to publish dates and details of any meetings we arrange. Just contact them by phone or through the Myeloma UK website.
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I live in South Tyneside, within easy reach of Newcastle, and I'd be very interested in a local support group.
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Hello Christine,
It can be quite difficult finding people in your area to start a support group. We have recently had the first meeting of the Scotland Support Group. We have only four people interested in meeting at the moment from Ayr, Kilmarnock, Dunfermline and Glasgow. We try to meet at a convenient location for everyone. It's a bit far away for you, but if you are interested in joining us, you would be very welcome, just post or email me.
I don't know if you have AL amyloidosis, but a couple of us went to the Myeloma UK meeting in Glasgow and we were made very welcome. As AL amyloidosis is treated similarly to myeloma, they welcome anyone affected by AL amyloidosis. So another alternative for you would be to go to one of their meetings. You might meet some others there. There are 2 in your area, Newcastle and Teesside. For more information, just click on the map in the link below.
http://www.myeloma.org.uk/how-we-can-help/meet-others/myeloma-support-groups/find-a-support-group/
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Hi
My name is Maureen, I live in a small village in Argyllshire
I was diagnosed with Hereditary Amyloidosis in 2008.
I would be interested in meeting up with other members of the
support group, I would manage to come to Glasgow.
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Hi Maureen,
Welcome to the forum. Take a look at the discussion on this board titled "Scotland Support Group". They are planning the next meeting for 23 July. I'm sure they'll be very happy to meet you.
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Hi Maureen,
As Miriam said, we are planning to meet at the Maggie's Centre at Garnavel Hospital, Glasgow on the 23rd of July at 6:30. There are are only 4 of us in the Scotland Support Group so far and you would be most welcome to join us. Three of us are planning to be there on the 23rd and two of us are planning to meet up beforehand for a bite to eat.
I'm also trying to set up another meeting on the 14th July, time and place still to be decided, again if you are available either post or email me through the forum.
I'm just back from the NAC, so the details have still to be finalised and I'll post them when we've sorted them out. We're in Dunfermline, Ayrshire and Glasgow so trying to get a suitable time and place for everyonne is a bit difficult.
I hope you and anyone else who is interested can join us, and I look forward to meeting with you.
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I was diagnosed with AL Amyloidosis in November 2014, and have only just signed up to this forum. There is so much useful information here, and it is good to get feedback about the experiences of other patients. Local Support Groups are a great idea, but I cannot find any information about one in my area. I live in North West Leicestershire, so maybe not too far from the Warwickshire support group.