A brain tumour that isn’t a brain tumour

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Melissa speaks with Ailsa Crowe, a content producer at Cavernoma Alliance UK. Ailsa has a symptomatic cavernoma in her right thalamus that cannot be operated on or removed. Ailsa knows first hand what it's like to be diagnosed with a rare disease and to have to work through the many challenges and obstacles that this brings.

In this episode we explore when an individual is told that they have a rare condition such as a cavernoma, it can be a long wait for further input from other specialists. Just because someone has received a diagnosis does not mean that the journey ends there and individuals may require frequent input and coordinated care depending on their unique situation. Primary healthcare providers can always be a point of support for their patients at all time points in the care pathway and should consider the long term impact of a diagnosis such as this.

Thank you so much Ailsa for your time and for sharing your story and your expertise to encourage all healthcare professionals to #DareToThinkRare

Links
Cavernoma Alliance UK https://cavernoma.org.uk/

Care Guidelines by Cavernoma Alliance UK https://cavernoma.org.uk/professionals/

Thank you to our 2022 Partners: Alexion, Amicus Therapeutics, Biomarin, Bionical Emas, Healx, Kyowa Kirin, Orchard Therapeutics, PTC Therapeutics and Sobi.

Medics4RareDiseases is a charity registered in England and Wales (1183996). The charity is financially supported by commercial partners. Some of these companies are pharmaceutical companies. The charity works independently from these companies who have no editorial control over this content or any of the charity's activities. Learn more.

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

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

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