Living with amyloidosis

Resources to support patients, carers and health care professionals with the long-term and everyday challenges of living with amyloidosis

Stories from the community

Saint and Alexander’s story: Saint’s V122I amyloidosis journey

In their video, Saint, who was diagnosed with the V122I form of amyloidosis in 2018 discusses his journey with the condition with his son, Alexander. Together, they talk about the information received from healthcare professionals and the importance of having supportive friends and family.

David and Libby’s story: knowing where to turn

In these videos, Libby, who used to care for her nan who had ATTR amyloidosis, talks to her great-uncle, David, who also has the condition. Together, they discuss the grief of losing a family member with ATTR, the impact a diagnosis has on the wider family, where you can turn to for help as a caregiver of someone with ATTR and how it can feel to care for someone with the condition.

Common questions answered

Coming to terms with a diagnosis of ATTR amyloidosis – Jo Ablett

Dr Joanne Ablett is a clinical psychologist with experience in chronic conditions. Her videos here focus on mindfulness and mental health, as well as how to tackle some of the tougher to answer questions a diagnosis of hATTR may raise.

1-1 Support for carers of those with ATTR amyloidosis – Vince Nicholas

Vince is a trustee of Amyloidosis UK. Having been diagnosed with hATTR amyloidosis himself, he is an expert in patient support and the services available to you and/or your loved ones.

Latest news

World Amyloidosis Day 2024 - Discussions

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Join our discussion forum

The purpose of our forum is to provide a channel for patients with amyloidosis, family and carers from all over the UK to communicate with each other. We hope that you find it helpful to connect with other people in similar situations to yourself.

The forums can be only be viewed and used by registered, logged in members. To join, please register. if you have already registered then log in so that you can join the forum discussions. If you have privacy concerns, then you might like to choose a pseudonym for your username and don’t share personal details in your posts.

Helpful sites and resources

Patients and families are encouraged to seek support and share their feelings with whomever they feel most comfortable with.

Alnylam have developed a website to support and empower patients and families affected by hereditary ATTR amyloidosis.

This resource is intended to support what can be difficult conversations with relatives about the genetic aspects of hATTR amyloidosis.

Living with amyloidosis

Resources to support patients, carers and health care professionals with the long-term and everyday challenges of living with amyloidosis