Changemaker Profile


I have lived with hereditary angioedema (HAE) all my life, I was born with it, and was symptomatic from about 2 years old. Like many HAE patients, and people living with other rare conditions, I spent my childhood in and out of GP surgeries and hospital clinics.

When I was diagnosed, I didn’t know anyone else with the same condition as me, which was rather challenging. However, I see myself as lucky. I was fortunate to grow up with a supportive family and friends. I have been able to work whilst living with HAE and hold down a job my whole life and I have many wonderful people in my life who I would never have met if I didn’t have HAE.

It’s vital to have hope when living with rare diseases such as HAE. Things have changed a great deal in my lifetime and I know that people are devoting their lives to improving the lives of those living with the HAE and other rare conditions, which gives hope to improved quality of life and potentially a cure.

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.


In all my work, the ideas of Representation and Awareness are omnipresent. The experience of collaborating with a changemaker and creating a piece that portrays several aspects of their life was why I wanted to be part of this campaign. It has also given me an opportunity to educate myself, to participate in an project that embodies my values and to be involve in an exhibition that has a positive impact.

Artist Profile

Jazmin Sheba Parsons

Jazmin is a mixed media artist; she was raised in the French Caribbean and her parents are English and Jamaican. She completed her Foundation year in Art & Design in France and then moved to the UK to complete a FdA in Photography at BNU and her Bachelors in Art & Design at Kingston University. Her style of painting is predominantly realistic life size portraits in monochrome colours as she feels that the subject matter is better observed and the intent clearer when the colour palette is minimal.

KAREN, THE HEALTH-MAKER by Jazmin Sheba Parsons

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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