I am number 17

I can now tell you that last November I travelled to London to take part in a campaign called “I am Number Seventeen“ The campaign is to raise awareness of the fact that 1 in 17 people in the UK will be affected by a rare disease at some point in their lives. The campaign is run by Takeda UK in partnership with rare disease advocacy groups. In my case Metabolic Support UK for whom I am an Ambassador put me in touch with the campaign.

Wednesday this week saw the launch of the campaign so with great excitement we travelled to London once again.

The 17 are now helping to communicate and spread awareness about rare diseases, as well as, what it is like to live with a rare disease. As one of the 17, I will be involved in the campaign in number of ways, some of which include sharing my personal story of living with a rare disease and spreading awareness about the campaign by posting on our social media channels, (Facebook, Instagram, Twitter). https://iamnumber17.org.uk/

A wonderful and talented young artist called Pie Herring created my piece of artwork. As I am an artist I also painted my own interpretation of my story. The launch was a great success and I am certain this is the start of a great campaign to raise awareness of rare and ultra rare diseases in the UK. #IAmNumber17