I Am Number 17 | Rare Disease Campaign

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

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January was an exciting month as it saw the launch of a campaign I have been part of officially come to life. It was great to finally see all the months of hard work come together as we all gathered in London to celebrate. The ‘I Am Number 17’ campaign was created and funded by the pharmaceutical company Takeda to raise awareness of rare diseases and the lives of those affected.

Myself and sixteen others, known as changemakers are the faces and voices of the campaign. Each sharing our experiences of living with a rare condition in the hopes of raising awareness.

The campaign has set out to show that rare diseases aren’t as rare as we may have been led to believe. 1 in 17 people across the UK is, in fact, affected by a rare condition. This figure may come as a surprise, as it did to me. This figure may relate to yourself, someone you know, or a parent or carer of someone with a rare condition.

When I was contacted with the opportunity to be part of the campaign and be one of the seventeen changemakers, I knew it was a great opportunity to spread more awareness of my rare condition.

That was the main reason for creating my blog five years ago. It was a way for me to raise awareness of Muscular Dystrophy, in particular, my condition, Limb Girdle Muscular Dystrophy (LGMD). Many people haven’t heard of LGMD, so it was important to me that I write about my experiences living with the condition and how it affects me and my family.

Being part of the campaign allowed me and the other changemakers to voice our experiences and show that we are more than our disability. There were a range of rare diseases within the ‘I Am Number 17’ campaign. Some are visible, and others are invisible.

One of the most unique and exciting parts of the campaign was each changemaker being paired up with an artist. Each artist was asked to represent and visually create a piece of artwork for each changemaker, based on their experience of living with a rare condition.

I was paired with Rachel Clarke, an incredible Irish contemporary artist specialising in abstract and figurative work. I had the opportunity to chat and share my thoughts and experiences with Rachel. Through our communication, Rachel was able to gain some knowledge and insight into my rare condition. She was then able to interpret that into a piece of artwork.

Rachel produced the most beautiful abstract painting of the rare hibiscus flower. It reflects determination, growth, and the ability to flourish despite its circumstances.

I absolutely love the painting.

The seventeen pieces of artwork were on display at the OXO Gallery in London for the official campaign launch. There are plans to hopefully take the artworks on a roadshow across the UK. This will allow more people to get involved and support the campaign. I can’t wait for that to happen, and I will, of course, share all the details with you as and when I find out.

As part of the campaign, each changemaker was also asked to describe themselves in four words. The four words that I choose are ambitious, optimistic, adventurous, and resilient.

Attending the campaign launch was an amazing experience, and I loved seeing the artwork for the first time. It was also a great opportunity to meet everyone involved in the campaign, including the organisers, changemakers, and artists.

One of the amazing things about this campaign is the way it connects people. I met lots of amazing people through this campaign who are also changemakers, and we have now become friends. We share many things in common, and that means a lot to me.

‘I Am Number 17’ campaign can do that for so many people, the more people get involved and show support. Allowing others to connect and share their experiences of rare diseases.

Read more about the campaign and the changemaker’s stories at the ‘I Am Number 17’ campaign website. You can also read my story and about my artwork by Rachel Clarke.

You can also support the campaign and share your experience of living with a rare disease on social media. To do so, go to Twitter and Facebook and use #IAmNumber17. Let’s get as many people as possible to raise awareness of rare diseases.

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