Changemaker Profile


My condition is Ehlers-Danlos syndrome (EDS). I had over a decade of questions, being told it was all in my head, I was a hypochondriac, and never being like my friends, always feeling different. My early years were much harder than my adult years. My teens were a kind of a miserable memory of just pain. Unexplained pain and always being on crutches or in plaster casts, and always being the end of a joke. It is hard when you can’t keep up with everyone and you don’t really know why.

People don’t realise the power of validation and belief… To be believed and understood, and not have to justify what we gone through is huge.

In my role representing The Ehlers-Danlos Society and its community, I am representing all the 14 types of EDS and hypermobility spectrum disorders.

Being neglected is a very common thing in EDS, you wait years for a diagnosis. It would be so wonderful if I went up to someone and said I have EDS and they didn’t say “what’s that?” That would be one success, as would people being believed and diagnosed when our symptoms start.

Launch Art Exhibition

I am number 17 launched in January 2020 with an art exhibition at the Oxo Gallery, showcasing each changemakers experience. Each changemaker was paired with an artist to create a bespoke piece of artwork, ranging from paintings, photography to physical installation. Below you will find information on the artwork created and the artists profile.


This piece is comprised of a stripped back series of portraits of the inspirational Lara Bloom. A blended triptych allowing you to see different sides of Lara (and her tattoos) all within the same image. Although we shot these as individual distinct portraits it just felt right and organic for them to be viewed together… separate parts coming together as part of a whole.

Artist Profile

Ross Ferguson

Ross is a photographer, mainly focussing on portraits. He has lived and worked in London and Los Angeles. Having worked primarily in the celebrity/actor/model field, Ross was keen to find an opportunity to do something that can help to make a difference to the world – that can hopefully raise awareness and help people that need help.

LARA by Ross Ferguson

This campaign isn’t just about us – it’s about you. If you live with, or care for someone with a rare disease, share your experience on social media using the hashtag. Help us be heard.

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