New site creates community spanning disability, impairment and chronic illness
Melting IceCubes, a new organisation with the mission of supporting people through health challenges ranging from impairments to chronic illness, has launched a platform that brings essential information and social networking features together in one place.
Once users have set up their account, the platform gives them a 360-degree view of their condition, including the latest news and research, relevant medical information and practical resources such as details of support services, resource packs and letter templates.
Users can create communities and post podcasts and videos, while the platform’s diary function can be used to track how different factors such as the weather, food and activities affect their wellbeing. Messaging and story functions encourage the creation of groups where users can share their experiences.
Melting IceCubes’s founder, Molvia Maddox, is a freelance IT project manager with personal experience of the impact of major health issues. Driven by her daughter’s diagnosis with a rare degenerative disease at the age of nine, she spent several years thinking about the concept before taking it to development.
Maddox, who has written a book and made television and speaker appearances to discuss genetic illness, said: “Life has a habit of throwing the unexpected at us. Negotiating medical appointments and managing the impact of a health condition or impairment on everyday life can be bewildering, frustrating and stressful for anyone with a health challenge, as well as the people closest to them.
“Our strapline is ‘helping you get on with life.’ We believe that knowledge is power, and we hope that Melting IceCubes will not only help to reduce feelings of isolation but offer immediate practical help to users when they need it most. Anyone can use Melting IceCubes – whether you’re dealing with a health challenge yourself or seeking to support a family member or friend by increasing your knowledge.
“This is just the start and we want Melting IceCubes to evolve and improve to be as useful as possible. We can only achieve that with users’ feedback, so we hope that people will get online, create themselves an account and let us know what they think.
“Ultimately, our goal is to be a supportive community, a credible source of information and a voice for positive change. We’re seeking to work with health organisations and charities to help signpost information and harness the collective power of one of the UK’s biggest and perhaps least visible communities.”
Nearly 14 million people in the UK have a limiting long-term illness, impairment or disability* – that’s around one in five of the adult working-age population.
While there are many health-based online communities focused on particular conditions, Melting IceCubes is unusual in supporting all disabilities and conditions, thanks to the technology that powers it. Machine learning and social linked data (‘solid’) tech mean that the platform can pull in the most relevant news, information and research for any given search, making it a one-stop source of health information.