I was born rare. I have a rare disease (a rare physical disability, Congenital Muscular Dystrophy, MDC1A). I have a rare mind and heart. I unlearn (and relearn) everything and love everyone daily in a rare way. I founded (and run) a rare business. And I live and give energy in a rare perspective.
Congenital Muscular Dystrophy is one of 7,000+ rare diseases in the world. The World Health Organisation estimates that one in seven people are impacted by a rare disease. 1 in 17 people will develop a rare disease at some point in their lives. Today 400 million people in the world – and 3 million in the UK – have a rare disease. But I love what my dear friend @tanvivas wrote today: “I’d say I’m rare but not diseased but hey!”
I often find that every day is a struggle, but I’m a continual work-in-progress. I’ve Read the rest
❅ I can’t stress enough for people to think before they speak if you have a friend/family member that suffers from a disability/invisible illness/chronic illness/rare disease. Something that you may class as a passing comment can cause more damage that you realise if it’s said to someone who’s suffering. It’s understandable that you don’t mean anything by it, but it would mean more if you just thought about what you where going to say before saying something that makes the person feel even more shit about their situation.
I have had these things said to me that have bothered/hurt me more than i can say.
•“I wish i was lucky enough to lose weight like you” – I’m losing weight through illness NOT through choice. I have a disease of the stomach and although i am physically starving hungry i cannot eat. I will be sick, be in agony, Read the rest
Showing my stripes with Pride! 🦓💪🏻✨
What many of you may not know (because I didn’t) is that July is Disability Pride Month. The concept only came about in 1990 but it has 3 main goals:
✨ To change the way people think about and define disability.
✨ To break down and end the internalised shame felt by people with disabilities.
✨ To promote the belief in society that disability is a natural and beautiful part of human diversity in which people living with disabilities can take pride.
All of these things are so incredibly important and change needs to be made in wider society in regards to ableism, accessibility and representation. Especially as being disabled is one of the only minority and marginalised groups literally anyone can find themselves in overnight. Things are improving but I long for more disability representation in mainstream media. I can name 1, Read the rest
The theme is ‘not every disability is visible’.
I tried very hard to make my disability as invisible as possible, because I thought that would make my life easier. But that doesn’t make my disability invisible if you look close enough. Ultimately, I have spent so much time in my life pushing myself beyond reasonable limits, not living life to the full because I couldn’t bring myself to ask for whatever accommodations I needed to actually do what I wanted to do. That’s not fair. I’m trying to go beyond this now, and be the whole person that I am without being afraid of being seen as less of the great, smart, talented successful person that I ALSO am. Disabled people are great ✨
I asked about what sprang to mind when I said ‘diversity in climbing’ and you all had such cool ideas. (Swipe!) Ultimately I Read the rest
My name is Luke. I was born with severe haemophilia B. In February 2020 I enrolled on to a gene therapy clinical trial. For my entry to the Rare Reach Festival I decided to give a brief glimpse in to my experience last year.
The rare disease community is something I am proud to be a part of and I have met some incredible advocates along the way. I truly hope to see the potential of gene therapy fulfilled for the wider rare disease community.
Find our more about rare disease here: https://www.raredisease.org.uk Shot entirely on iPhone. If you want to know more about my experience living with haemophilia over the past 26 years, check out the other videos on my
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Simply click the vote now box at the top of this page and enter your email address. You Read the rest