[kirstenhParticipant]

Hi All,

Are there any support groups for AL Amyloidosis?
I have emailed a few links found on line, but never hear back. I find my symptoms are too different from Myeloma (which I am also diagnosed with) to get any comfort from the support groups.

I am based in Essex and was diagnosed in Dec 2023, and would love to join any group that has some other AL Amyloidosis people present. I have mainly cardiac amyloidosis symptoms which have stopped all my sporting fun 🙁

[rainbowParticipant]

Hi Kirstenh, I found on Facebook.. Amyloidosis Support Groups (AL-Light Chain-Primary) it’s a private group and you may find it helpful. I have learned a lot from this group.

[annakParticipant]

hello, I too have Al cardiac amyloidosis and myeloma, diagnosed in January 24. I attend the myeloma support group that meets once every 3 months in Hampshire, but there is no-one there with Cardiac Amyloidosis.In fact I have never met anyone else with the disease. it would be good to connect with others. Where are you based?

[spete51Participant]

Hi there. I’m in the same position, aged 51 and based in Glasgow. Would be great to connect with others who have both myeloma and cardiac amyloidosis.

[annakParticipant]

hello! how nice to get reply.I think the problem is that we are just a very rare group. If you would like to connect I can send you my contact details and we could perhaps speak on zoom

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