Changemaker Profile


I received my diagnosis at the age of 21. I was diagnosed with Ehlers-Danlos syndrome (EDS) first and a couple of hours later I was diagnosed with mast cell disease. I had no idea what was going on, I just remember feeling very different to the people around me. I remember feeling ill all the time, experiencing a lot of pain, not being able to enjoy eating without being sick.

As I was getting older, it was consuming every part of my life. I lost nearly all my friends, as I was at home 24/7. After going to the doctor’s multiple times, I kept getting turned away. I had to almost prove how poorly I was.

This is the first time I’ve ever been this open and the reason I’m putting myself in this vulnerable position is, so awareness increases about rare conditions.

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.


Sharing my interpretation of the unique experiences an individual with rare diseases is living with, has been a great honour. As my art concerns itself with societal concepts and how art is able to bring these to the viewers attention and possibly reconsider their opinions about them, this was a project congruent with my practice. I hope to deliver a thought provoking and encouraging viewpoint on the life of my paired changemaker.

Artist Profile

Sara Jolly

The imperfections of life are the driving force behind Sara’s art. Depicting life’s rawness is her central aim. Sara specialises in water-based and oil-bar paintings on large scale papers, which allow for the subject matter to mould the fragile paper medium. The wonky and imperfect end product speaks to the perfectly imperfect nature of life. In Sara’s practice, she focuses on societal issues, such as the varying impacts of climate change on different parts of our society.

DAY BY DAY by Sara Jolly

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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