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
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.

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.