One Step Further: Stories from the community
David & Libby
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.
Life on hold
Impact of diagnosis
Knowing where to turn
Dealing with grief
Patrick & Trish
After being diagnosed with ATTR amyloidosis Pat, and his wife Trish were initially ‘shell-shocked’. In these videos they discuss the diagnosis, living with ATTR, how it feels to be a wife and also at times feel like a caregiver, and how they decided to tell their daughter, Gabby, about this hereditary condition.
Telling our daughter
Going through diagnosis
Life with ATTR
Being a caregiver and a partner
Saint & Alexander
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.