Co-creating educational resources to empower young people

London, UK 28th February 2023 – Today Action for XP, in collaboration with the University of Dundee’s Scottish Centre for Comics Studies and the teen XP community launch a new resource to support and empower young people with xeroderma pigmentosum (XP)

XP is a complicated condition, the management of which involves extreme avoidance of UVR. This means it can be a very visual condition and speaking with our teen community we realised they would really benefit from a resource that could both help them understand their condition in an age appropriate and engaging way and be a valuable tool when talking about their condition with their peers. This project builds upon on our Little Ted project which, provides age-appropriate education for children under 12.

Nicola Miller Action for XP project Lead.

Co-creation – a vital strategy for successful patient and peer education

Working in collaboration with the Scottish Centre for Comics Studies at the University of  Dundee, and a focus group of young people and their parents, Action for XP believe that engaging educational tools make an important difference in changing attitudes.

Our community often receive comments such as ‘why are you dressed as a spaceman or beekeeper’ or ‘are you a vampire’. This is upsetting enough for adults but most of our community will have been dealing with these types of comments since childhood. It was vital to this project that our young community were involved from the start to provide their experiences and direction to the creative team. Giving young people the tools to advocate for themselves is an important step as children grow, spend more time away from the security of parents and transition into a more independent stage of life.

Richard Barlow Action for XP Chair

​Today sees the launch of the first phase of this project. The XP and Me comic includes the first three themes with many more planned. These initial themes cover “information on XP”, “what XP is and what it isn’t” and “neurology and XP”. The comic was developed by a team that includes Professor Christopher Murray and Dr Megan Sinclair, with artwork by comic artist Vanessa Cittadino.

Since 2016 the Scottish Centre for Comics Studies has worked with partners to co-design informational comics, many of them addressing misunderstood illnesses, such as fibromyalgia, ME, and coeliac disease. It has been a privilege to work with comics writer Dr Megan Sinclair and artist Vanessa Cittadino, both graduates of the Comics Studies programme at the University of Dundee, and the wider team, to help bring these informative stories about XP to life.

Professor Christopher Murray (Director of the Scottish Centre for Comics Studies, University of Dundee)

  The core idea of this project was to let the voices of young people with XP be heard. Comics are an ideal platform for these voices, where creativity, empathy and storytelling can be combined into an accessible and striking form. We hope that youth people living with XP will be able to connect with the comic, and see themselves reflected in the stories being told. Equally, the comic will allow people without XP to understand what XP is and isn’t and be able to better engage with the XP community. We are delighted to be able to launch this comic on Rare Disease Day and are grateful to Action for XP and the National Lottery Awards For All Scotland for funding this project.

 Dr Paul O'Mahoney (formerly of the University of Dundee)

A project that plans for the future

This is just phase one of a larger project. We have designed this project so that we can expand the topics and add to the resource over the coming months as our youth community continue to engage and let us know where there are gaps in education. It is important that educational projects don’t become static and can be built upon, and we are excited to see this project grow.

Nicola Miller, Action for XP

With more themes to follow and translations planned this resource will be one that will continue to support this young XP community as they navigate life living rare.

The comic is really realistic, very beautiful. I hope that people will now know what XP is for real!

Noha Chaabi, young person with XP, France

​You can find XP and Me HERE.  https://bit.ly/XP-And-Me 

About xeroderma pigmentosum

Xeroderma Pigmentosum (XP) is an ultra-rare genetic condition characterised by an extreme sensitivity to ultraviolet radiation (UVR) which affects less than 150 patients in the United Kingdom and equally low numbers around the world.

Patients with XP lack the DNA repair mechanism to repair damage caused to the skin by exposure to ultraviolet (UV) light, in particular UVA and UVB and are at a 10,000-fold increased risk of developing skin cancer than the general population, often from at a very young age. In addition, around 30% of people with XP also develop neurological abnormalities which can range from learning difficulties, hearing loss and eyesight problems to loss of gross motor skills and mobility.

For more information visit www.actionforxp.org For more information about the educational comics produced by the Scottish Centre for Comics Studies visit www.scottishcomicstudies.com/public-information-and-educational-comics/.

Contact

To arrange an interview with Nicola Miller or Richard Barlow please contact Rebecca Stewart on Rebecca@actionforxp.org
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This project is a in collaboration between Action for XP and the University of Dundee’s Scottish Centre for Comics Studies.
​The project is joint funded by Action for XP and the National Lottery Awards For All Scotland​