Emma Fogarty talks EB, life outside the condition, DEBRA Ireland and why fundraising is fundamental

10/14/19 • 49 min

On Episode 12 (the final episode in Series 1) we have the patient ambassador for DEBRA Ireland, Emma Fogarty. Emma suffers from RDEB, also known as Recessive Dystrophic Epidermolysis Bullosa. EB is a rare, genetic skin condition which causes the skin to blister at the slightest touch. These wounds, some of which will never heal, occur both internally and externally and are constantly at risk of severe infection. Children that are born with EB are highly susceptible to a very aggressive form of skin cancer from as early as their teenage years and there is currently no cure for EB. Emma has an extraordinary life, and has experienced pain most humans can’t even fathom. This remarkable woman is everything The Other Side Of Perfect is about because, she’s not defined by her struggle, instead her strength. In this episode we discuss in detail, what it’s like living with EB, life outside the condition, the incredible people Emma has met on her journey, and why fundraising is so important.
On the topic of fundraising, DEBRA Ireland is the only charity devoted solely to the care and cure of EB. DEBRA supports patients and their families living with the devastating effects of this condition and helps them cope with all the challenges that it brings. DEBRA provides this through their in-home EB Community Care Programme as well as advancing research both nationally and internationally. In February 2020 I will be taking part in the DEBRA Ireland Arctic Challenge. My mission is to survive in the harsh environment of Northern Finland, 150km above the Arctic Circle, totally off grid with no running water or electricity. The aim is to learn new skills and survive the extreme cold of the arctic regions whilst raising money for children living with EB. Last year the trip raised just under €250,000 from just 35 participants. In 2020 there's 36 of us heading and it's the first year men will be joining the mission. I know you will take a huge amount from this episode and I urge you to use the emotion and empathy experienced to make just a small donation where 100% of the proceeds from my Arctic fundraising go directly to DEBRA Ireland.
DONATIONS https://www.justgiving.com/fundraising/joannelarby
Arctic Challenge https://www.youtube.com/watch?v=i0AnSVhxHVE
DEBRA Ireland https://debraireland.org/
Visit https://theothersideofperfect.com/

Previous Episode

Síle Seoige talks cancer, acceptance, motherhood and how negativity can be the catalyst for change

On Episode 11, the penultimate episode of Series 1, we have the stunningly soulful Síle Seoige, who I have officially named the ‘Galaxy bar of voice’ - smooth and full of depth. We chat about Síle’s extensive media experience over the past 20 years, from RTÉ and radio to some really heartfelt topics. Síle opens up about her journey with cancer and recovery, a relationship breakdown, miscarriage and motherhood. We talk about acceptance, non judgement, finding your true self, how negativity can be the catalyst for change, femininity and breathwork. I hope you enjoy what I found to be a truly therapeutic conversation.

Visit https://theothersideofperfect.com/
Síle Seoige https://www.instagram.com/sileseoige/
Sponsor https://www.cleancutmeals.ie/
Thank you to the sponsors of this episode and Series 1, Ireland's leading meal prep provider, Clean Cut Meals, who are offering 20% off their meals if you use the code 'JOANNE20'.

Next Episode

Joanne Larby talks body neutrality, avoiding comparison, breakups, and healing a broken heart

Welcome back to The Other Side Of Perfect and Episode 1 of Season 2, I’ve been really excited to get stuck into this series. The guests that I have coming up have the most wonderful careers and truly captivating stories, and after each interview I walk away feeling utterly inspired so I know there's massive benefit in what they have to say. Similar to last season I wanted to kick things off with a solo show. It's been massively requested and I’ve no idea why, but my most listened episode was the one I did on my own covering my life story, career and how I got to where I am now. I figured it would be a lovely way to format things going forward and also reconnect with you the listeners. I would like to also take this opportunity to thank you lot for making the show land in the Top 10 Best Listens of 2019 in its new category on Apple Podcasts. Receiving that email from Apple was a lovely little moment, and this whole passion project has grown into something that I’m really excited to expand on in 2020. We also have some amazing new sponsors on board, and I want to let you know that I choose my sponsors as carefully as I choose my brand partnerships on social media, so these will always be relevant to my listenership and benefit you in some way.
On today's show I discuss the real life stress you don't see on social media; my recent melt down, feeling overwhelmed and dealing with comparison. I wanted to sit down and have a chat about two of the most common topics that I'm regularly asked about through social media. I run through a variety of your anonymous questions about body image and break ups. Getting to a state of body neutrality; learning to love the body you have today, realising you have the power to change it if you're truly unhappy, weight fluctuations, period bloat, getting back on the bandwagon and my motivational tips. I also discuss healing a broken heart, trying not to focus on the status of your friends, improving your self esteem after a toxic relationship, and being single.
Visit https://theothersideofperfect.com/
Sponsor https://www.rainforest.ie/
Today’s show is brought to you by Rainforest Spa. Rainforest is a gorgeous Day Spa and Yoga Studio in Enniskerry, Co. Wicklow who you can check out on Instagram @rainforestspa. Rainforest is giving my listeners an exclusive 10% off Day Breaks, valid until June 2020 if you use the code JOANNE10 when booking.