In this episode of Rare Together, we’re joined by two people affected by multiple rare diseases. Millie from Bel Air, US, and Liz in Cardiff, South Wales. Liz has recently been diagnosed with a rare form of Scleroderma which has led to two further rare diseases, and Millie is living with Scoliosis, Spastic Quadriparesis, and Dysautonomia.
Join us in this really engaging conversation as we learn about the pressures of living with multiple rare diagnoses, from the complications of misdiagnosis to managing the myriad of healthcare professionals and medications, right through to the vital support from friends and family. Liz and Millie also offer some great insights into how they’ve adapted their mindset to approach life with multiple rare diagnoses, including what they do to stay positive and the adaptations to their everyday life that make things a little bit easier.
Our host today as always is the wonderful Andrew Grant. Andrew is an experienced medical research consultant with LDA Research, an international medical market research organisation working in the pharmaceutical industry and medical device sectors.
If you would like to share your story and help raise awareness of a rare condition you’re affected by, please apply to be part of the podcast here. Alternatively, join the conversation online by becoming a member of our private Facebook group, Rare Disease Network, where we’ve created a community of people from across the globe affected by rare diseases.
Introducing Liz - 01:32
Introducing Millie - 04:35
Are conditions linked? - 08:29
Misdiagnosis - 10:16
Living on multiple medications - 12:42
A community of HCPs - 17:54
The effect on family and friends - 24:36
“What’s going to be next?” - 29:46
Staying positive - 33:12
Audio: Spirit Blossom by Roman Belov