In this episode of Rare Together, we’re joined by two people affected by rare diseases in the UK; Bobbie, from Northumberland, who has been living with lymphedema since 1985 and Joanna in Kent, who is living with Dercums Disease.
Join us in this insightful conversation as we hear how these two wonderful ladies’ lives have been affected by their rare disorders. From educating healthcare professionals to the impacts on family life and their hopes for the future, you’ll learn a lot about rare diseases that cause painful swelling and growths, the stigma attached to lymphomas and the tips and tricks they use to adapt to life with their rare condition.
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 sector.
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 Bobbie - 01:27
Introducing Joanna - 03:22
Living with Lymphedema - 05:45
Living with Dercums Disease - 08:58
“I have been told by so many doctors fat doesn’t hurt… it does.” - 09:25
Orange peel skin - 12:24
The importance of leg stockings for swelling - 13:43
Getting lymphomas removed - 15:29
“Even some of the specialist’s I’ve seen… they don’t know what it is!” - 19:15
Manual massage - 27:24
Adapting to a life on medication - 31:09
Effects on family life - 34:57
Hopes for the future - 41:18
One thing we’d like you to know about our conditions… - 48:58
Audio: Spirit Blossom by Roman Belov