Support groups for Al Amyloidosis

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This topic contains 2 replies, has 3 voices, and was last updated by  annak 3 weeks, 4 days ago.

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  • 2nd February 2025 at 12:11 pm #150471

    kirstenh
    Participant

    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 🙁

    8th February 2025 at 2:17 pm #150508

    rainbow
    Participant

    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.

    4th September 2025 at 9:09 am #151258

    annak
    Participant

    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?

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