Staff member Ailsa, who has a cavernoma in her right thalamus, sat down with the team at Medics4RareDisease to talk about her experience of cavernoma.
In this episode, Ailsa share the story of her journey to diagnosis, some of the symptoms she was experiencing and her recovery since then.
She then discusses the vital role of primary care (GPs) and the importance of care coordination in treating patients with cavernoma and other rare diseases.
We want to say a big thank you to everyone who participated in our survey to help us prepare for this project.
You can check out Ailsa’s episode of The Rare Disease Podcast 4 Medics, “A brain tumour that isn’t a brain tumour” on Spotify, Apple Podcasts or at http://www.m4rd.org/podcast/
Thanks for listening!