Changemaker Profile


I eventually received a diagnosis of Hypophosphatasia (HPP) at 51 years of age. My whole life I’d been seeking answers for pains which seemed to be in my bones and joints. As a child I always struggled with physical education but was often encouraged to take part in activities which gave me more pain.

When you have an undiagnosed condition, you don’t tend to talk about it too much because there is no explanation. You don’t want to be noticed. You don’t want to stand out as being different, you just want to fit in. The same with activities, you just try and join in and then find yourself in severe pain for days.

After many years of pain and seeing so many specialists who diagnosed various problems but had no real answers, I decided to take matters into my own hands. I began collating all the evidence in a table format, writing down each blood test, X-ray finding and various diagnoses. I wrote a potted history from childhood and then went back to my GP. He picked up the baton and did some research and decided to refer me to a metabolic specialist. Within 12 months I had my diagnosis of Hypophosphatasia.

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 depicts a portrait of Mel Williams, who lives with hypophosphatasia (HPP); an ultra rare progressive metabolic bone disease. This artwork, which has been painted using layers of wax and oil paint, observes Mel surrounded by poppies. This is significant as Mel herself is a painter, who predominantly works with wax. She speaks of the strength painting gives her when coping with HPP. Pie wanted to capture this in her portrait through the inclusion of the poppies, which pay homage to one of Mel’s previous artworks entitled ‘Remembrance’.

Artist Profile

Pie Herring

Pie Herring is a Guildford-based artist, who graduated from The Edinburgh College of Art in 2018. Herring prepares her canvases by building up layers of wax and oil paint, which she later reveals by scratching into the painted surface. This process gives each painting an array of varied textures which enhances the sculptural quality of each piece. Previous explorations focus mainly on issues that relate to gender and social politics, with a particular focus on representations of females within mainstream popular culture.


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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