My rare disease

Katy Baker
  • 5.0 (2)
  • HEALTH & FITNESS
My rare disease

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.

  1. 05/25/2023

    Koolen-de Vries Syndrome - Becky

    In this episode, Becky tells us about the rare condition that she has along with 2 of her children, Koolen-de Vries Syndrome which was only founded in 2006! Becky opens up about how the condition can present in different people and how it can affect people day-to-day. We then talk about mental health and statistics published by Rare Disease UK. Becky tells us about her own mental health experiences and how for her, being different is empowering. Becky has created her own KDVS community which you can find via: Thriving Rare on Instagram and Koolen.mama also on Instagram.

    57 min

  2. 07/30/2022

    Cystic Fibrosis - Annabelle Whiting

    I really enjoyed talking to Annabelle about her chronic illness Cystic Fibrosis. Annabelle spoke openly about how she got diagnosed with her condition, how illness has changed our outlook on life as well as the importance of psychological support for individuals with a chronic illness. Annabelle has really highlighted how much chronic illness can affect every element of your life including schooling and friendships. Thank you Annabelle for sharing your story.

    51 min
  3. Thyroid cancer - Carly Flumer

    02/15/2022

    Thyroid cancer - Carly Flumer

    In this episode, I speak to Carly who has been diagnosed with thyroid cancer in both 2017 and 2021. Now in remission, Carly still gets symptoms such as fatigue which can affect her day-to-day life. I talk to Carly about care young people need in hospital, help we need from professionals, support Carly has had for her mental health and advice she would give others with a rare disease.

    30 min
  4. Ataxia - Tallulah Clarke

    11/13/2021

    Ataxia - Tallulah Clarke

    In this episode, I talk to Tallulah about her rare disease Ataxia. We chat about how it took nearly 10 years for Tallulah to be diagnosed and how it affects her day-to-day. We discussed the importance of accessibility and some challenges that Tallulah has faced with this. Degenerative conditions can be tough, especially with a global pandemic in the way. Tallulah raises awareness about how this has affected her and how as a young person, she wants to be as independent as possible and not let anything stop her.

    27 min

  5. 10/22/2021

    Congenital heart defect - Liam Garay

    Welcome to the first episode of season 2! In this episode I talk to Liam about his congenital heart defects and the impact this can have on his mental health. We share some mental health facts and figures and raise awareness of the importance around physical and mental health support

    50 min

  6. 08/11/2021

    Periventricular Nodular Heterotopia (X linked) - Georgie Peterson

    In this episode Georgie tells me about her rare disease Periventricular Nodular Heterotopia. We discuss how illness can affect relationships with family and friends, how a life changing diagnosis can impact someone’s life as well as how rare disease can impact mental health and changes Georgie would like to see to ensure a person’s mental health is cared for. Georgie has written a book called ‘Freaks Like Me’ which has an honest account of what Georgie faces with her condition. You can buy it now! https://www.amazon.co.uk/Freaks-Like-Me-Georgina-Peterson/dp/1788785959

    50 min

  7. 06/29/2021

    LIVE episode with Katie Callaghan!

    We recorded this live from the Stereo app! In this episode you can listen to some more of the day-to-day challenges people with chronic illness and rare disease can face such as challenges in employment, University, telling new people about your illness and more.

    42 min

  8. 06/19/2021

    Friedreich's ataxia - Georgia Hart

    In this episode Georgia shares her experience with Friedreich's Ataxia which is a genetic rare disease affecting approximately 1 in 50,000 people. Georgia talks about role models in the media and why there needs to be more disability respresentation in the media as well as how this interest has motivated Georgia to be an advocate. We also discuss Georgia's time at University and some tip tops for people with illness who are wanting to study.

    28 min
See All (29)

Trailer

Ratings & Reviews

5
out of 5
2 Ratings

About

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.

Information

  • Creator
    Katy Baker
  • Years Active
    2020 - 2023
  • Episodes
    29
  • Rating
    Clean
  • Copyright
    © Katy Baker
  • Show Website
    My rare disease

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