In this episode we will hear from fifteen year old Tayen, who lives with Hypohidrotic ectodermal dysplasia, which is 1 of about 150 types of ectodermal dysplasia. Most people with hyperhidrotic ectodermal dysplasia have a reduced ability to sweat and struggle to regulate their body temperature, which is one of the symptoms Tayen has to manage.
Read MoreIn this episode I spoke to Tully Kearny MBE DBE, about her life as an athlete whilst managing a progressive neurological movement disorder. They say that to be a successful Olympian you need determination and training, and just listening to Tully speak made it clear that she has both the steely determination and the commitment to train in spades. To use her own words; ‘ It was much easier for me to move in the water than it is on dry land. I was treated as any other kid, I wasn't treated as a disabled kid. I wasn't singled out. I could keep up with kids my own age….so there was kind of just complete freedom.’
Read MoreIn this episode we spoke to Dame Laura Lee DBE, the Chief Executive of Maggie’s about the incredible work they do, and the ethos behind it. The ways in which Maggie’s are changing and positively impacting the world of cancer care are truly incredible. Front and foremost of their mission stands a truly reassuring and also hugely empowering statement; “we know that when you’re diagnosed with cancer you need much more than just medical treatment.” With the reality of living with, or supporting a loved one with cancer affecting so many of us this recognition of the importance of a broader support modality is absolutely vital.
Read MoreWe speak to Henry Fraser about his life, his art and his two award winning books. After a life changing accident at the age of 17 Henry truly had to learn to ‘accept and adapt’ to the challenges he faced. And the ways in which he has not only adapted to his new path but embraced life’s unexpected opportunities is quite simply remarkable.
To read more about Henry and to see some of his beautiful mouth paintings click here.
Rarity Life is a brand new online publication that offers those affected by rare disease, disability and cancer the opportunity to create content that is truly inclusive, to unify our collective experience and to celebrate and share our differences.
Read MoreHannah always knew she wanted to be a model, and still dreams of the day when she can walk into a high street shop and see her photographs displayed as part of a huge promotional campaign. In the ‘Fragility of Beauty’ Hannah Harpin talks honestly about her experiences of being bullied on the basis of the way she looks, and the ways in which she has fought to reclaim and own the attention she receives. Hannah is determined not to let her rare disease limit or even define her, choosing instead to share her story and to be the change and the role model that she needed to see as a little girl.
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