My rare disease

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 Syndrome, what it's like having a sister with an illness there is so little information on and some of the memorable experiences that stand out for her. It has been really interesting listening to how a rare disease can affect the whole family, not just the person with the condition and how Scimitar Syndrome has had an impact on her life.

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 episode, we are talking about Fiona's experiences in hospital, discussing the stigma that comes with mental health and advice Fiona would give to people struggling.

Below are numbers and support you can access if you need to reach out, please talk to someone if you are struggling, your feelings are valid and you are so loved.

Samaritans: 116 123 (available 24/7)

MINDinfoline: 0300 123 3393

The Mix: www.themix.org.uk (online chat)

Crisis text line: text 'shout' to 85258

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 to miss out on what a 'normal' young person can sometimes take for granted, how much rare disease can affect your mental health and the lack of support in this area when being diagnosed with a life-changing condition but also how Daisy's rare disease has given her the motivation to work in the rare disease sector and give other young people a platform to feel empowered and share their inspiring stories.

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 in dealing with emotion. In this episode we discuss how an illness affects the whole family, the mental health struggles that can come with having an illness, extra hurdles Sadie has come across along the way and the services that the Cavernoma Alliance and Cavernoma Society have to support people living with the condition.

7th Sept is Youth Mental Health Awareness Day and I am so lucky to have one of my friends Sophie chat to me about her rare disease and how much a rare disease can affect your mental health. In this episode, we discuss grief that comes with illness, how your life can be completely changed when you become suddenly unwell and we share our views on statistics I have found on just how many people are affected my ill-mental health.

To mark Idiopathic Hypersomnia awareness week,  this episode features Matt who suffers with the condition but also has made it his mission to be a patient advocate across the UK. In this episode we talk about how Matt was diagnosed, the debilitating symptoms he experiences, how the word 'idiopathic' can cause so much uncertainty and some of the  medical highs and lows Matt has been through.

This first episode I speak to one of my best friends and old housemates Ellie. Ellie has a couple of chronic illnesses but they haven't stopped her from achieving a first class degree, a full-time job and she has ambitions to become a Children’s Psychologist. In this episode we discuss Ellie's health journey, the different health professionals she's come in to contact with as well as how illness can affect mental health and much more.

Welcome to my podcast! Each month I will be speaking to a patient with rare disease, a health professional or chronic illness advocate with the aim of raising awareness of all aspects of managing an illness from mental health to relationships, friendships to work life balance. I have heard some truly inspiring stories which I can’t wait to share.