Visit our active online patient discussion forum at amyloidosis.org.uk/forum.
The forum has grown and expanded steadily since it went online in early 2015. There are nearly 1000 members and some threads have been viewed more than 22,000 times. The forum is most useful in providing information, support and a feeling of community for people who feel isolated by having a rare disease that most people they meet haven’t even heard of. It provides a channel for patients with amyloidosis, family, friends and carers from all over the UK to connect, communicate and help each other.
Feedback from forum members:
The forum has lessened the feelings of isolation experienced by we members of the club none of us wanted to join. We have made new friends, exchanged stories and experiences, been professionally informed about a range of issues relating to the disease, been kept abreast of exciting new drug developments, been made aware of other valuable resources in the UK and beyond and been inspired by the charitable work of fundraisers.
I think this forum is a fantastic site as at first when you are diagnosed you are so scared and feel so alone. ….Everyone needs support with this disease so never be afraid to ask questions that only we patients understand and can answer.
Lovely to have this site and be able to ‘chat’ to people ‘in the know’ where Amy is concerned! So many people are so ignorant of it – ignorant may be a word that is quite strong but it sums up how I feel constantly battling to relate the story to people when they ask and say ‘but you’re cured now’ – I wish – Grrrr