This is the story of my beloved sister Louisa, always missed and never forgotten.

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Louisa was a born entertainer, she could sing, she could dance and she was the most brilliant storyteller you could ever meet.

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The fact is Louisa was special and I feel it is my duty to keep her memory alive and in by doing so I aim to shine a light on the little-known disease that cut her life short; Scleroderma.

Scleroderma if you don’t already know is an autoimmune condition meaning the immune system becomes overactive and attacks healthy tissue in the body. Many people can live with the disease with the aid of medication and will suffer varying symptoms, but for some the disease will accelerate and start to attack internal organs. This is exactly what happened in Louisa’s case and she passed away in January 2017 aged only 44.

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Losing Louisa has been truly devastating for me and my family and in coming to terms with our loss I have found myself needing to get more information on the disease that I knew so little about, and in doing so I have learnt that it can strike anyone of any age as it is not a genetically inherited disease.

It was in 2019 that I felt ready to embark on a project that I felt would bring awareness not only to the disease but also to those living with it. We all know the term ‘a picture tells a thousand words’ and I knew that a portrait study of Scleroderma sufferers could be powerful if executed with compassion and education for the spectator.

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With my background as a professional photographer and with the help and support of British based charity SRUK, the project started to take shape.

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15 brave participants all suffering with Scleroderma became my studies and we embarked on various shoots in London. It was explained to the models that the aim for this shoot was to show the varying visible effects that are sometimes prevalent in the facial features of Scleroderma sufferers and the images would be in raw form with no editing or beautifying.

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Not only did we want to capture their image but we also wanted to tell their story, hearing their bravery in accepting their diagnosis and varying accounts of how they live with the disease was both humbling and cathartic.

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At the beginning of 2020 we were on course to start photo shoots with several more models with the aim of exhibiting the “Skin to Stone’ portrait study in a West End gallery. Covid interrupted that timeline and I found myself having to seek alternative ways of working.

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With the genius work of Lauren at Ink and Toast Creative, I was able to explore the idea of bringing the exhibition online. Whilst this was not the planned route, I am ever hopeful that by creating a virtual exhibition, the scope of reaching, engaging, and educating a wider audience can only reinforce my original plan to make this devasting condition more widely known so we can shine the light on getting better diagnosis and treatment for sufferers.