15 January 2021

Katy started her podcast "My Rare Disease" with the aim to empower, educate and raise awareness of chronic illness and rare disease. In her recent episode with Sophie-Louise, they discuss Sophie-Louise's experiences living with Secondary Adrenal Insufficiency.

We spoke to Katy and Sophie-Louise to hear more about how this insightful podcast episode came to be and their motivation behind raising awareness of rare conditions.

Katy's Story: My Rare Disease podcast

Hi, my name is Katy and I am the creator of my podcast ‘My Rare Disease’. I created this podcast during the summer in 2020 because I wanted to raise awareness of how much a rare disease or chronic illness can affect someone’s life. Along with this (and seeing as at this point we were in the middle of a pandemic so I had more time on my hands) I thought that the time was right!

Even though I am not from the Addison's community, I do have a rare disease. At 10 weeks old, I was diagnosed with Scimitar Syndrome, a congenital heart defect and only 1 working lung. This involves regular hospital appointments, tests, physio, medication and a lifetime of uncertainty. Due to my condition, I have also developed kyphosis – an inwards curvature of the spine which causes chronic pain and some really hard times. With my health experiences along with the affect it has had on my mental health, education and much more, I knew that I wasn’t the only person feeling like. So I decided to create this platform to empower my guests to share their stories, educate others about different illnesses and address the fact that illness is so much more than just a physical ailment.

 The idea to create my podcast was a pretty quick one, I only have my phone and laptop and had absolutely no idea what I was doing! It look a lot of research - I watched YouTube clips on how to edit and really started from scratch, teaching myself  how to produce a podcast. I really am the least creative person I know, so even making a logo was tricky for me! However once I worked out how to upload on to a site and distribute it to Spotify, Apple Podcasts etc, it really gave me the motivation to get a lot of people listening.

I am so proud to say that that I have now released 11 episodes (alongside studying for an MSc!) and have just under 800 listeners on my podcast. It may not seem a lot for others, but it means so much to me that people are taking the time to listen. I have had some lovely messages off people, and this just makes me want to make it bigger and bigger.

Click here to listen to "My Rare Disease", and follow Katy on Twitter and Instagram.

Sophie-Louise's Story: How the podcast episode happened

Sophie-Louise is a Film Production graduate currently studying an MA in Critical and Creative Writing. As well as writing her first novel, she has a strong determination to help educate herself and others on Secondary Adrenal Insufficiency (SAI), and hopes to pick up as many opportunities as possible to help achieve this. Here Sophie-Louise shares with us her experiences of SAI and how Katy's tweet led to her being a podcast guest!

"I can’t remember who, but someone retweeted Katy’s tweet calling for people who have rare illnesses to come and talk to her on a new podcast she was starting. I saw it and thought it was an excellent opportunity to spread some awareness out there about my condition. We had an initial videocall after I replied to her, and had a great chat about what the episode would involve and ended up chatting about life in general too.

Living with Adrenal Insufficiency

Trying to explain what living with this condition is like, to people who have never experienced it before, is one of the most challenging things I think I’ll ever experience. I usually go for the ‘shock’ factor: “I had a migraine, half of my vision in my left eye went, and when the migraine passed the vision never came back.” I then go into a brief explanation about how it was a benign tumour, which is gone now, but: “I now have this condition where if I experience extreme shock I could die”. I feel like without stressing that importance, no-one would take it seriously.

Before being diagnosed I’d never experienced what it was like for someone to look at you and just make the assumption that you’re 100% healthy, which I was also guilty for doing with others, a harsh reality that presented itself to me, but one I’ve hopefully learnt from. I also had this belief that doctors could fix everything, they knew every medical ailment under the sun, and because of that, poor health was easily fixed. And in some ways it is. But living with SAI (Secondary Adrenal Insufficiency) has taught me that sometimes doctors don’t have answers—and that’s not their fault, it’s the education system, it’s the money for research, and it’s the lack of understanding. 

Research Issues

That’s just the overall picture though. I have many moments which I talk about in the podcast which help to explain what it’s like to live with this condition. A moment that comes to me often is if I’m feeling sick, and worrying about whether I’ve taken enough steroids, I then worry if I’ll actually wake up in the morning. We have no form of ‘checker’ where we can prick our finger and it’ll tell us our steroid levels. I, and many others, have to judge our medication based on how we feel, and symptoms alone. Which when I was newly diagnosed was difficult to comprehend. The reason being, my benign tumour (craniopharyngioma) presented symptoms of; loss of appetite, nausea, partial loss of vision, feeling weak and fatigue. Almost all of those are the same symptoms of SAI, and when I woke up from surgery I was told to take some steroids and I’d be on them for life, because I should’ve been on them before then, but for some reason I wasn’t.

Processing the Diagnosis 

The nurses were great at explaining the condition, but after that I had to learn what symptoms I would present, and how to respond to that. I’ve dealt with a college that told me I couldn’t go work on campus because no-one was trained to use my emergency pen (I turned up anyway), and I experienced a broken elbow, fractured finger, and a suspected adrenal crisis in my first year of uni — just months after I’d had my second surgery. The mental toll has also been difficult, with bouts of depressive moods and frustration. The frequent doctors trips were also new to experience, but now they just feel like a part of life.

Despite all this negative however, I managed all two years of college and three years of university and I’m currently studying for my masters. I try to see all my experiences as learning curves that help to better my understanding of others as well as myself.

It also helps that charities like this one exist. When making my documentary I did a lot of research and found the ADSHG website. I was able to help educate myself and find resources that I didn’t know existed. Like other charities, they’ve also been particularly helpful with navigating people like me through the pandemic, and releasing up-to-date information as and when they get it.

Without any of the charities, I really think a lot of us would be in the dark about how to handle the parts of our condition the doctors might forget about."

To hear more from Sophie-Louise, you can follow her on Instagram, Twitter and Facebook.

Read about the support we offer for young people with Addison's or adrenal insufficiency.

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Do you have a story about Addison's to help or encourage others? Whatever your story or experience we would be delighted to hear from you. Tell us your story.