Helping families learn more about MPS diseases: animations for the MPS Society

The MPS Society has been transforming the lives of those affected by MPS, Fabry and related diseases for over 40 years. We're delighted to be helping them to share their knowledge, empathy and understanding with people affected by these rare genetic diseases.

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We have developed three animations for the MPS Society to help families and people with MPS diseases learn more about the conditions and find out how the society can help them live well with these rare genetic diseases.

What we did

We were commissioned to develop animations for three different but related genetic diseases, Fabry, MPS I Hurler, Hurler-Scheie and Scheie, and MPS II Hunter disease.

These are rare and often complex conditions, each with their own range of physical and neurological symptoms and different degrees of severity that changes from one person to the next and across different stages of life.

How we did it

To start the process we read up on the existing literature and developed draft storyboards that provided a starting point for experts, families and patients to review and comment on.

We held online workshops with groups of patients and practitioners – including clinicians from UCL's Institute of Immunity and Transplantation – to hear what mattered to them and to listen to their ideas and responses to our visual and verbal stories.

Following these workshops we revised the storyboards and worked with the MPS Society to ensure that they delivered the right balance of support and knowledge for people who may only recently have discovered that they or their loved ones were ill.

We worked with our illustrator, Emma McGowan, to develop our visuals into roughs for approval and then integrated final images into the animation-ready storyboards before production.

We made visual connections between key organisations including the use of a sunflower motif in reference to Hidden Disabilities.

Design challenges

Working with complex and often painful conditions requires patience, empathy and creativity.

We asked everyone to share things that gave them hope and things that drove them nuts so that we could understand how they felt about the conditions from a human perspective.

We needed to find metaphors to describe complex and often invisible conditions. For example, we used the idea of poorly designed bin bags to explain how these diseases fail to remove certain chemicals from your body.

We worked with our illustrator to visualise some of the physical changes that mark out these diseases while emphasising that differences are a natural part of all our lives.

We constantly thought about the positive aspects of life with a rare condition; the love and care that holds families together and the support that comes from finding the community and is embodied in the MPS Society.

This has been a challenging and rewarding project and we hope that the animations will provide viewers with the knowledge and support that they need in their lives.

Following this work we have been commissioned to create a film to celebrate the MPS Society’s 40th anniversary.

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