LizMorgan 1 year ago
1 reply
Good afternoon everyone.
My lovely friend has a life limiting illness which is very rare. CIDP - anyone here have any knowledge of this disease? He lives in Soham and has agreed to let me try and find someone to talk to that isn't family or close. Any suggestions please? xx
Clare 1 year ago
Hello,
Welcome to Marie Curie’s Online Community. We hope others will see your post and be able to share their own experiences with you too.
We’re sorry to hear your friend’s diagnosis and all that he is going through. Due to the rareness of his illness It might be more challenging finding a support group specifically for CIDP. I have come across this charity that offer some support - Rare disease UK . I have included a link to their web page https://www.raredisease.org.uk/" title="https://www.raredisease.org.uk/" href="https://www.raredisease.org.uk/" rel="noreferrer noopener" target="_blank" class="fui-Link ___1eya986 f3rmtva f1ewtqcl fyind8e f1k6fduh f1w7gpdv fk6fouc fjoy568 figsok6 f1hu3pq6 f11qmguv f19f4twv f1tyq0we f1g0x7ka fhxju0i f1qch9an f1cnd47f fqv5qza f1vmzxwi f1o700av f13mvf36 f1cmlufx f9n3di6 f1ids18y f1tx3yz7 f1deo86v f1eh06m1 f1iescvh fhgqx19 f1olyrje f1p93eir f1nev41a f1h8hb77 f1x7u7e9 f10aw75t fsle3fq f17ae5zn" style="overflow-wrap: break-word;">https://www.raredisease.org.uk/
It may also be helpful to enquire about local specialist support groups or online support with the team supporting your Friend as they will hopefully be able to offer reassurance and indicate the kinds of practical help that might be available to him .
Marie Curie's free Check in and Chat service might be worth considering . It's a telephone service that provides ongoing emotional support with the same person each week, no matter where you live in the UK. He could be matched with a trained volunteer to suit his preferred day time and the availability of the volunteer. The volunteer will call each week to talk over the phone for around 30-40 mins for up to 12 weeks. Further information regarding this service and how to access it can be found on our website via this link . https://www.mariecurie.org.uk/help/support/check-in-and-chat" title="https://www.mariecurie.org.uk/help/support/check-in-and-chat" href="https://www.mariecurie.org.uk/help/support/check-in-and-chat" rel="noreferrer noopener" target="_blank" class="fui-Link ___1eya986 f3rmtva f1ewtqcl fyind8e f1k6fduh f1w7gpdv fk6fouc fjoy568 figsok6 f1hu3pq6 f11qmguv f19f4twv f1tyq0we f1g0x7ka fhxju0i f1qch9an f1cnd47f fqv5qza f1vmzxwi f1o700av f13mvf36 f1cmlufx f9n3di6 f1ids18y f1tx3yz7 f1deo86v f1eh06m1 f1iescvh fhgqx19 f1olyrje f1p93eir f1nev41a f1h8hb77 f1x7u7e9 f10aw75t fsle3fq f17ae5zn" style="overflow-wrap: break-word;">https://www.mariecurie.org.uk/help/support/check-in-and-chat
We also have information on our website about living with a terminal illness at www.mariecurie.org.uk/help/support/terminal-illness.Everyone is unique when it comes to their own personal priorities so please don’t hesitate to get in touch with us If you or your friend want to talk with us further then you’re welcome to do so here on the Marie Curie Community, it is your safe space, and our Support Line is also here for you on Freephone 0800 090 2309 or through webchat at www.mariecurie.org.uk if you want to discuss this with one of the team.
Take care
Joanne -Support Line Officer
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