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.

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.

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. 

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.

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

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

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.

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.

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 years and the impact that has had on Marie's wellbeing as well as learning your limits and the support that Aspergillosis organisations provide. You can read Marie's story here: https://www.blf.org.uk/your-stories/my-shocking-diagnosis-of-aspergillosis Patient organisations that support people with this condition: Aspergillosis.org , aspergillosistrust.org and British Lung Foundation.

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 can bring such as gratitude, resilience and strength. Declan gives some wonderful information about what he would like people without the condition to know but also advice for people going through the same or similar situation as him. Caraldine gives an insight about how illness affects the whole family, the importance of self-esteem and friendship during difficult times and her brilliant idea about launching care boxes for those in hospital. 

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.

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

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.

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.

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!'

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.

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.

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