Last week, our Young Persons Project Officer, Sally, travelled down for the opening of the 1 in 17 campaign in London. This campaign aimed to raise awareness of rare diseases in the UK through the stories of 17 people and art, as Sally explains.
“The “I am Number 17” campaign was created by Takeda Pharmaceutical to raise awareness that 1 in 17 people in the UK will be affected by a rare disease during their lifetime, whether through a diagnosis or in supporting a child, friend, or loved one. We deal with such a diverse range of conditions at Metabolic Support UK, including my own – XLH, so this is a message close to my heart and I jumped at the chance to take part.
I was chosen to be one of 17 “Change Makers” from across the UK, who would be the face of the campaign. We were each paired with an artist, who would create a piece reflecting our individual experiences to be part of a special exhibition.
First of all, I went down to London to share some of my story and have my picture taken for the publicity material. It was great to meet some fellow Change Makers and the creative team behind the campaign, but also nerve-wracking being photographed and talking about my experiences in such a public way.
I was matched with an artist named Gabrielle D’Mello, who works with a range of materials and formats. When I received a preview of her work, I knew straight away that she could create something really special.
We spoke on the phone and online about my journey and what it’s like to live with XLH. I’m quite an optimistic person and try to do as much as I can and not let my condition limit my experiences more than needs be. We talked about how I love to travel, and how my work with XLH UK and the European Patient’s Forum has allowed me to meet other patients from all over the world. But we also talked about the hard times, how XLH affects me emotionally and physically, and how I get strength from the amazing support of my friends, family, boyfriend, and colleagues. I sent Gabrielle pictures of all the fun things that I get up to as well as the recovery from my last difficult operation, so that she could see the contrasts and use some of that imagery. She then created some different concepts and we talked about how I connected with each one, so that we could narrow down to the final ideas. When I finally saw the piece, I loved it from first sight.
The exhibition was launched at a private event taking place on 22nd January at Gallery @ OXO, which is part of the OXO Tower complex on London’s South Bank. I travelled down with my mum, who has seen me through so many ups and downs, so that she could share in it as well. It was a very special evening meeting the rest of the Change Makers and two of them, David Rose (Rare Revolution Magazine) and Lara Bloom (Ehlers Danlos UK), shared their own powerful stories.
The atmosphere in the room was one of real positivity and the artwork ranged from canvas, weaving, digital and 3D art, to interactive projections. The gallery stayed open until Saturday 26th January. I returned to see the gallery at the weekend and at that point, it had already had over 100 visitors.
Although it was challenging at times, I’m so glad that I took part in such a unique campaign, which has really made people think. You can see all of the art work and read more about the campaign and the Change Makers online at www.IamNumber17.org.uk, and follow the hashtag #IamNumber17, which you can use to share your own experiences of having your life affected by a rare disease.”
If you would like to share your story and raise awareness of your condition, please contact Maggie on firstname.lastname@example.org or 0845 241 2173 to see how we can help.