My rare disease

by Katy Baker

Welcome to 'My rare disease' podcast. This is a platform where I raise awareness of something that affects 1 in 15 people, rare disease. By chatting to patients, health professionals and advocates, we talk about all aspects of rare disease including relationships, mental health and much more. I cannot wait for you to hear some truly inspiring stories from some absolutely amazing people. From being diagnosed with a rare disease myself at 10 weeks old, it has given me the motivation to give others in the rare disease community an opportunity to share their thoughts and experiences.

Episodes

Osteogenesis Imperfecta - Charlotte Proud

27m · Published 09 May 10:07

In this episode, Charlotte shares her experiences with Osteogenesis Imperfecta and we discuss her love for sport, the challenges that school sport brought, memorable moments with her rare disease as well as being both a patient and professional within the NHS.

Phenylketonuria (PKU) - Sarah Marshall

27m · Published 01 May 17:08

In this episode, I talk to Sarah about her rare disease PKU, a condition that affects approximately 1 in 15,000 people in the USA. We discussed the psychological impact a rare disease can have, what it means by owning your rare disease as well as the importance in rare disease research and the brilliant advocacy work Sarah has been involved in. You can find a link to Sarah's website here: https://prosperouspku.com

LIVE episode with Katy Baker & Katie Callaghan

59m · Published 09 Mar 14:21

We tried our first LIVE chat on the Stereo app! We touched on some different examples of transitions that can occur throughout someone's life, not just through healthcare. We talked about the importance of a smooth transition, shared our own experiences and answered some questions!

Scimitar Syndrome - Katy Baker

54m · Published 28 Feb 14:48

In this episode, I go from the interviewer to interviewee! With thanks to Matt, I have the opportunity to talk about my rare disease Scimitar Syndrome. We discussed how much more there is to rare disease, how much it can affect different areas of your life such as your mental health and why a smooth hospital transition is so important. I really enjoyed talking about motivation towards being an advocate and why creating this podcast is so important to me. Thank you so much to everyone who has listened to me podcast so far, I am so grateful and so happy that people are learning about rare disease.

Occipital Horn Syndrome - David Rose

47m · Published 10 Feb 13:30

In this episode we learn about David's rare disease Occipital Horn Syndrome as well as some of the day-to-day challenges people with rare disease can encounter including finding affordable travel insurance, additional barriers within the education system and visiting new hospitals where you are having to teach professionals about your rare disease. We discuss how awareness in all of these areas is really important but also how David's rare disease has steered him to now work in the rare disease sector.

Mitochondrial myopathy - Adam Johnson (DadVocate)

35m · Published 25 Jan 18:14

In this episode, we discuss Adam's rare disease which affects approximately 1 in 4,000 people and his diagnosis journey. We chat about how difficult it has been to tell Adam's family and young children about his rare disease and how illness really does impact the whole family in different ways however Adam and his daughter have used this to fuel their passion for advocacy and this is what formed 'Dadvocate!'

AFAP & Hereditary Colon Cancer - Dan Dry Dock Shockley

40m · Published 19 Jan 19:52

In this episode, Dan talks about his experience with the ultra rare disease AFAP (Attenuated Familial Adenomatous Polyposis) only found through a routine test, how it’s had a life-changing effect on his life as well as the effect it has had on his family, his positive outlook on life and the motivation to be an advocate in the rare disease community.

Ehlers-Danlos syndrome & Chronic intestinal pseudo-obstruction - Katie Callaghan

31m · Published 20 Dec 15:38

This episode features Katie who has EDS and CIPO and we discuss what it means to have a good transition in hospital, the barriers a wheelchair user faced in both education and society and how she's used her experiences to create her wonderful organisation Cards For Bravery which provides cards to people in hospital to brighten their day.

Dyspraxia and Cerebral Palsy - Natalie Williams

27m · Published 19 Dec 17:11

This episode features Natalie who talks about a less well-known disability, dyspraxia. We discussed the barriers Natalie has faced but also what being an advocate means to her and how she was recruited in to being a Global Brand Leader for the charity Invisiyouth.

Adrenal insufficiency - Sophie-Louise White

50m · Published 20 Nov 18:33

In this episode, I talk to Sophie who has Secondary Adrenal Insufficiency. As well as telling me all about her rare disease, her different experiences in the healthcare world and some topics with stigma attached, Sophie shares how her condition has motivated her to have a different outlook on life, direct a short documentary, hold down a job and study masters degree. https://t.co/ze91VnvjfM & https://t.co/tg7GTrUTDi

My rare disease has 29 episodes in total of non- explicit content. Total playtime is 19:03:41. The language of the podcast is English. This podcast has been added on December 23rd 2022. It might contain more episodes than the ones shown here. It was last updated on May 18th, 2024 15:10.