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

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/