Katy Baker
My rare diseaseEpisodes
Episodes of My rare disease
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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 a
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 suppo
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 i
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 T
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 a
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 di
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 you
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 respresent
In this episode, I talk to Marie about her experiences with Aspergillosis and the appointments and tests she went through until she eventually got a diagnosis. We discuss that the average time it takes to get a rare disease diagnosis is 7-8 yea
In this episode, I am joined by mother and son Caraldine and Declan who share their experiences with the condition, Atonic Bowel. We discuss their stories separately and are really honest about the challenges but also advantages complex illness
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
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
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 ex
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
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 educat
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 rea
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
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 o
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
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
This episode features a very special guest, my sister! Lucy is 22 years old, she’s a trainee Lawyer and we love spending time together when we can. In this episode, Lucy and I speak openly about what she thinks about my rare disease, Scimitar S
This episode is all about one of my friends from Uni Fiona and her mental health. Throughout Uni, Fiona went through multiple hospital admissions for her physical health and this led to a stay at an inpatient mental health hospital. In this epi
In this episode I chat to Daisy who has Cholesteatoma, a condition which mainly affects her hearing but has caused anxiety, low mood and years of being misdiagnosed. In this episode we discuss being a young person with rare disease and having t
In this episode I talk to Chloe who studied Occupational Therapy at the University of Northampton and is now working as a paediatric OT supporting children with a range of additional needs. Occupational Therapists are important in helping peopl
This episode features Sadie who is a 3rd year Politics and International Relations student at the University of Westminster. Sadie was diagnosed with Cavernous Malformation at 19 years old resulting in chronic fatigue, migraines and difficulty
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