Only 180 People Have This Condition | Pure Autonomic Failure & Raising Awareness
Episode notes
Today we’re interviewing Eddie and Suzie, who are raising awareness of PAF (Pure Autonomic Failure), a rare condition that only around 180 people in the UK live with.
In this episode we discuss…
- What it’s like to live with a rare condition
- Setting up their own support group and the importance of a supportive network
- Going from caregiving to being cared for
- Travel insurance when you have a rare condition
- How the National Disability Card helps on days out and at theatres
- How the National Carers Card helps carers get recognition and assistance
💜 Join Suzie & Ed's PAF Support Group: https://www.facebook.com/groups/869025589357423
💙 Apply for the National Disability Card: disabilityid.co.uk
❤️ Apply for the National Carers Card: nationalcarerscard.org.uk