Monday, 27 January 2020

I Am Number 17 | AD

AD | This is a sponsored post, all opinions are my own.

Last week after 4 months of work behind the scenes a new rare disease campaign launched, with myself and 16 other change makers being the face of it. If you've been following me for a while then you'll know that I started talking about my condition and disability on my blog and online so I could raise awareness of my rare condition, so when the opportunity came up to extend that into something bigger I couldn't say yes quick enough.


I Am Number 17 has been funded by Takeda and is all about raising awareness of the fact that 1 in 17 of us has a rare condition. Individually we might be rare, but together we are so very common. Coming together with the other change makers involved, all people with a rare condition or a parent/carer of someone with one, really made me realise just how common it was to be affected by a rare disease. According to Rare Disease UK there are between 6,000 and 8,000 rare conditions out there, with 5 new rare diseases being described in medical literature every week.

This campaign is also about letting our voices be heard as well though, and for me in particular I think it was really important that we gave a platform to conditions that perhaps don't get as much support as others. Through just the other 16 change makers I have learnt about conditions that I'd never even heard of before, and we hope that the same affect will ripple across everyone else who comes across the campaign. We are putting faces and stories to conditions many have never heard of and cannot even pronounce. So, whilst this campaign does have a focus on raising awareness of the number of people affected, at the core of it is also the aim to put voices to those numbers too.


As part of the campaign each of us were paired up with an artist who have each created a piece of art based on our stories, our journey's, the things most important to us. When I was paired up with my artist Grace Lanksbury I knew just from looking at her Instagram and style of art that we would be the perfect pairing. Through just one phonecall with Grace she managed to understand and capture my story perfectly, highlighting the things that were important to me. My powerchair, independence, turning my situation into something positive and productive. The piece of art reflects all of that perfectly. When I look at it one word comes to mind, power. I look strong and powerful in the art, which fights against what many people see when they look at me. They see weakness and vulnerability, and often pity me. When in reality my powerchair gives me independence, my rare condition has given me a career and a passion. I am defined by my condition and that's something I'm proud of it, because without it I wouldn't be where I am now. All my major achievements have been because I'm disabled, because I have Marfan Syndrome and for me the artwork really reflects that.

All the artwork was placed on display at the OXO gallery in London last week, it was truly the most surreal experience seeing a piece of art based on me sat on a wall in an art gallery. It was also an opportunity to meet all the other change makers and our artists, it was wonderful to know that there were so many others living with a rare disease in the same room as me. We might not have shared a diagnosis, but the experiences we share linked us together. I heard stories of people who like me had grown up with Great Ormond Street being a second home or just a welcoming place and so many unfortunately shared the familiar story of diagnosis taking so long. Years for some people. It really reminded us all why this campaign is so important and why we must all never stop using our voices.


You can learn more about this campaign and all the other wonderful change makers on the campaign website. If you're affected by a rare condition then you can also share your story on social media using the hashtag #IAmNumber17, it would be amazing to show people just how many different conditions exist and how varied our experiences are.
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