by Georgie | Sep 12, 2022 | RAREfest
People with rare conditions often feel their voices are lost in the wind, vying for attention against other better-known diseases. Creating memorable, unique ways of communicating stories can help rare voices get heard.
Animation, memorability, insight
With a background in social science and as a member of the haemophilia community, Dr Rich Gorman is interested in people’s lived experiences of healthcare. Together with his colleagues Bobbie Farsides and Tony Gammidge, their project pushed the boundaries of academia, showcasing the great potential in arts-based methods for creating ways to evoke patient experiences.
Securing funding from The Wellcome Trust, the project invited rare families to participate in creative mediums like stop-motion animation and collage. It revealed innovative ways that messages can travel to others through emotions, insight, and memorability.
Poignantly, it revealed the impact of taking such messages back to clinical colleagues and policy members in translating the subjective experiences of those with rare diseases. The collection of works has been showcased to Brighton and Sussex Medical students who revelled in the benefit of gaining a more holistic understanding of life with a rare disease.
Dr Richard Gorman
“We found just how powerful and evocative the creative pieces produced by families with rare conditions can be in communicating the challenges and joys of daily life with a rare disease.”
Academia meets subjectivity
Publishing their project meant overcoming barriers in the typical confines of academia – like academic journal submission lengths and format. It highlighted the potential for arts-based methods and the challenges in expressing their impact in the scholarly sphere.
The project aimed to collaborate with participants, working with them at every step, maintaining receptive to creative mediums that were both effective and fun to partake in.
Vaila Morrison participated in the project alongside her daughter, who has KAT6A syndrome. She described the value of connecting with other rare families, sharing ideas and mutual understandings.
“An important part of the project has been expressing feelings not just around the rare condition itself, but also those evoked from navigating processes like obtaining a diagnosis, accessing healthcare, and the challenges surrounding this.”
At Rarefest22, the team will share some of the project’s spectacular artistic pieces, messages, and stories. They are excited to share some of the artistic pieces that the participants have created and to give them a wider platform
The collection of works provides an innovative means to help people outside the rare disease community understand more about what life can be like with a rare disease. There will also be an exciting opportunity to come and have a go!
by Georgie | Sep 12, 2022 | RAREfest, Community, Med tech, Technology
Aisha Purvis has spent over ten years helping others in the health and social care sector. She has witnessed first-hand the multi-faceted challenges patients faced regarding malnutrition and dehydration.
During the pandemic, Aisha was completing her university placement as a mental health nurse. It was an immensely challenging time for those working in the health and social care sector. With over ten years of experience in the industry, she had developed for a keen eye for identifying current systems that weren’t effective and a passion for suggesting solutions.
She witnessed first-hand the multi-faceted challenges patients faced regarding malnutrition and dehydration, exacerbated by staffing issues and the heart-wrenching events of the global pandemic.
For patients that are non-verbal, explaining their choices and preferences poses a huge obstacle. Aisha knew from her work as a care home manager and research as a student that 45% of patients admitted to the hospital risk malnutrition and dehydration.
Aisha also has a daughter diagnosed with Rett syndrome, which affects her MECP2 chromosome. Her daughter struggles with neurodevelopmental, communication, and motor difficulties.
“During a regression, my daughter would eat only pickled onion space raiders. I would come home every day to my blue-tongued little girl. I couldn’t bear to see my daughter struggle like I had seen my patients.”
Founder , Sensmart
Aisha came up with the idea of Sensmart and co-founded it with Alex Chikhani. Sensmart provides a multi-sensory experience, combining scent prompts which reflect an entire meal, texture touch, tactile images, braille, and personalised voice prompts.
The product aims to help patients engage in a meaningful activity whilst promoting choice and independence. The product’s tremendous attention to detail allows family members to customise auditory stimulation to reflect their voices. It also provides real-life textures like that of orange peel to enable patients to connect with their choices.
“We’re tackling not only the challenge of malnutrition and dehydration but also communication barriers, food waste, and the issue of healthy eating. We’re helping both the planet and people.”
The idea highlights how those who are proactive in finding groundbreaking solutions in the rare community can have impacts rippling across multiple industries and conditions. Alex describes how various fields have already taken an interest in the product – from the private and public healthcare sectors to tourism and hospitality.
Join them at Rarefest22 for an interactive multi-sensory showcase. The team has devised various engaging, fun activities accessible to all. Be prepared to have your senses warped! Learn more about their exhibit at RAREfest22.