The Rare Disease Podcast
3.5 million people in the UK live with a rare disease, so while each disease is individually rare, together rare diseases are common. Hear interviews with patients, clinicians, advocates, students and researchers focusing on rare disease in clinical medicine.
This podcast is brought to you by Medics for Rare Disease. Podcast distributors create their own transcripts and M4RD doesn’t take responsibility for them
The Rare Disease Podcast
Living with an Undiagnosed Condition with Tilly Rose
Let us know what you think of this episode! We read every comment we receive.
Our first guest for Season 4 of The Rare Disease Podcast for Medics is Tilly Rose, who studied English at Jesus College, Oxford. She started a free platform called that Oxford Girl and published a book of the same name, all centering on facilitating greater access to Oxford University.
Tilly achieved all this while living with a chronic, undiagnosed condition, which turned out to be active tuberculosis. In 2022, through her social media activism, she documented her time in hospital and shone the light on the reality of the diagnostic odyssey. Thanks to her sharing personal and raw details of her story, she's gained a following of over 50,000 people who now better understand this phenomenon that is the foundation of most rare disease journeys today.
Last year, she signed with the soho agency for her memoir ‘Be Patient’ a warm Darkly comic account of her lifetime behind the hospital curtain.
Tilly chats to Lucy about her rare disease journey so far.
Find Tilly Rose on instagram @thattillyrose
Or read her blog at https://www.thatoxfordgirl.com/
Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.
M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast.
M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare