Changemaker Profile


X-linked hypophosphatemia (XLH) is a rare bone condition which is caused by a deficiency of the mineral phosphate in the body. This leads to bone and muscle pain and weakness, stiffness, fatigue, and an increased risk of fracture. I was diagnosed at 18 months old when I started to walk, so I’ve lived with XLH as long as I can remember. I always have some level of pain and stiffness; however, it can be manageable.

It’s not always easy to know how to talk to people about XLH, especially as my condition isn’t always apparent. For me, society can have very set ideas of how a ‘well’ person should look and be, and how a ‘sick’ or ‘disabled’ person should look and be, and when you don’t fit this expectation you can just be treated as ‘weird’.

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.


Growth to Broadened Horizons is a representation of how Sally lives with X-linked hypophosphatemia (XLH), as she believes that the world is what she makes of it and having XLH doesn’t let her shrink her horizons. Through support from family and friends, travel and networking she overcomes the difficult periods and grows more each day.

Artist Profile

Gabrielle D’Mello

Gabrielle is a multidisciplinary artist, who likes to focus on emotion through realism but also abstract colours and shapes to blur boundaries. Within design, Gabrielle’s interest is in narrative and storytelling through various methods of digital and hand drawing.


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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