My rare disease

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.