Living with Behçet’s 

We were approached by Rachael Humphreys from Behçet’s UK and asked to work with their members to produce an animation to raise awareness. 

This project brought together patients from across the UK via Zoom to share their experiences through different art forms to create an animation. We aimed to offer a cathartic experience for the participants, while also raising awareness of Behçet’s disease.

Behçet’s disease is a type of autoimmune disease that causes inflammation of blood vessels throughout the body and can cause a myriad of life-altering symptoms such as swollen joints, genital ulcers and blurred vision. Behçet’s is a rare condition, with around 1000 people diagnosed in the UK and many patients often wait years for a diagnosis and treatment.

The arts became the focus of the sessions, and creative writing and drawing became an outlet for difficult-to-explain emotions. After a few weeks of working with Katja Stiller, Jane Hubbard joined and helped produce a script, inspired by their individual artwork. In the remaining weeks, we edited the script, produced more artwork, and recorded the voiceovers. The composer and post-production artist Jacob Meadowcroft then came to discuss the sound effects and music, and in the final session the group approved and celebrated the finished animation.

We used a person-centred approach, introducing mindfulness and EFT to the sessions to help create a safe and relaxing environment and to widen participants’ tools to manage pain. As Behçet’s disease is rare most participants had not met many others with the same condition.

For the participants, it was a relief to hear that others had similar experiences. Feeling like people were genuinely listening, believing and understanding made a huge impact on communication as the sessions progressed. Having learnt new coping mechanisms throughout the process gave the group confidence to create something meaningful that could help others suffering from the condition. This resulted in a film that will communicate what it is like to live with Behçet’s disease that is hoped to reach beyond the participants and impact the wider community.

It took me 25 years to get a diagnosis, I was starting to doubt myself

I will bookmark the link to the animation on my phone and play it to junior doctors and anyone who needs to know…

The animation Living with Behçet’s was launched on  the 15th of October 2022 at The Behçet’s UK Conference in Stevenage. 

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