In this episode of Rare Together, we’re joined by two people affected by rare diseases on opposite sides of the globe: Wendy, from Anglesey, Wales, is living with multiple conditions, including EDS, POTS and Psoriatic Arthritis, and Taylor, who you may also know from her Substack ‘Rare Disease Girl’, living in Santa Monica, who is living with Atypical HUS.
Join us in this insightful conversation as we hear how their different rare conditions affect their daily life. We discuss how big a role ‘luck’ played in both women receiving their diagnosis, how exercise and being proactive are transformative for them in living with their rare conditions and how they manage their differing conditions.
Wendy and Taylor also discuss the importance of mental health care for people affected by rare diseases, and we learn the importance of retaining a positive outlook.
Please note that this conversation contains themes of traumatic childbirth experiences.
Andrew Grant returns as host and facilitates this incredible conversation; Andrew is a highly experienced medical research consultant with LDA Research, an international medical market research organisation working in the pharmaceutical industry and medical device sectors.
If you or someone you care for is affected by a rare disease diagnosis, you can join the conversation online by becoming a member of our private Facebook group, Rare Disease Network we’ve created a growing and supportive community of people from across the globe affected by rare diseases.
You can subscribe to Taylor’s Substack, Rare Disease Girl, here: https://taylorcoffman.substack.com/
You can follow Taylor on Tiktok here:
https://www.tiktok.com/@taylorcoffmanmade
Audio: Spirit Blossom by Roman Belov