We got to catch up with the wonderful rare disease advocate and youth team ambassador Katy Baker as she makes waves in the world of rare youth advocacy with her incredibly insightful and intimate podcast series 'My Rare Disease'. I (Daisy Marriott-Youth Editor) had so much fun chatting with Katy for her podcast series. We spoke about everything from mental health and rare disease to growing up. Since then Katy has gone on to interview many more fantastic individuals from our #RARECommunity and Katy isn't stopping there as she has just released her own clothing and accessories line dedicated to raising awareness for RARE.
My name is Katy, I am 23 years old and I live with the rare disease Scimitar Syndrome. Having a rare disease that only affects 1 in 100,000 means that there have been and are still some barriers along the way that others without a rare disease will maybe not experience.
''I created the podcast ‘my rare disease’ to allow people to share their stories about rare disease and chronic illness. By chatting to patients, health professionals and advocates, we discuss important topics that come with illness and share some really important messages. You can listen on Apple Podcasts, Anchor, Spotify and Overcast.''
I have been lucky to be a patient advocate since the age of 19. From creating a short film with a charity about overcoming barriers to writing articles for The Mighty Site, speaking at rare disease events and being a Global Brand Leader for Invisiyouth, I have made it my mission to share my perspectives on the world as someone with a rare disease often in the hospital environment and share some really important messages to ensure people with rare disease don’t have to feel alone.
Since launching my podcast in August with the aim of raising awareness of different rare diseases, educating others about the challenges it can bring and to empower my guests to share their stories, I have received great feedback. I then thought of how I can raise awareness even more, after looking around on Instagram for inspiration, I found the company Teemil. Teemil allow you to design your own adults clothing, children’s clothing and tote bags and sell them; Teemil print and ship them, all you’ve got to do is promote your online shop and create the designs!
I really am the least ‘arty’ person I know. My drawing ability was always the worst in my class at school and the number of times I had to re-do my art homework because it was not good enough was embarrassing. I even once got shouted at for not being able to draw a cube – you get the message, creativity is not my thing!
So when designing my products with Teemil I wanted to go with the simple but effective method and get the messages across. I currently have 20 products available to buy, a mix of children’s clothing, adults clothing and tote bags. The tote bags have facts about rare disease with the idea of people using them for their shopping and others reading and therefore learning about rare disease!
If you would like to have a look to see what is available to buy, you can via this link: https://myraredisease.teemill.com
Written by Katy Baker