Others who have already kindly contributed towards the Invisible Manners project have offered a wide range of experiences in which they felt invisible because of their rare disease, such as being questioned for using a disabled parking space or being picked last for sports teams at school. In essence feeling “invisible” just adds extra difficulty and uncertainty to the life of an individual with a rare disease and is often founded on ignorance of conditions that are not immediately identifiable.
Everyone has felt invisible at times, overlooked, or misunderstood. But this is only amplified when you have a rare condition that many others may not fully understand or perhaps even be aware of at all.
So, NPUK, got to work and began to develop a campaign focused on “invisible illnesses”, with the hope it could speak not just to those affected by Niemann-Pick disease, but also the wider rare disease community. After the success of NPUK’s previous short film, Go Make Memories (2019), NPUK were keen to work on another similar project. But of course, COVID-19 had other ideas, and as such after a lot of head scratching and mind mapping, they came up with Invisible Manners, a short animated film that would feature a poem, heavily influenced by the experiences of those with an invisible illness and those who have at times felt invisible because of their condition, and read by rare disease community members.
Likewise, some very talented musicians from the northeast, the location in which the NPUK Office is situated, have kindly offered their tracks to be used during the film. Electronic duo Badger (Christopher Maltby and Simeon Soden) have provided their atmospheric track “Manchild’s Cat”, which will be used in the introductory title sequence, and former band Lilliput, have provided their track “Heavy Clouds (Believe)” which will close the film.
Invisible Manners is really coming together, through the kind support of the NPUK community, wider rare disease community and many others who have lent their time, enthusiasm, and creative skills to the project.
As the film has grown in scale and support, NPUK really want to make the entire campaign something special, and push for a project that adequately reflects the scope and depth of what an “Invisible illness” can be. This led them to develop the promotional campaign that will run alongside, “Invisible Me”, which will look a little closer at the experiences represented in the film and provide a little more explanation as to how one’s day-to-day experiences are affected when living with an invisible illness. This campaign will run across the NPUK social media channels and will include video and written stories and experiences from the rare disease community.
This is where you come in, NPUK wants to hear from you! Can you think of a time that your condition, or the condition of a loved one, was perhaps overlooked, misunderstood, or made to feel an encumbrance on someone else? NPUK would love to hear from anyone who considers themselves affected by invisible illness, this does not just mean those who have an invisible illness but also parents, guardians, family, and friends. Any experience or story is valid and important, however trivial it may seem to you, this project is all about pushing for kindness and equal treatment of all abilities and conditions. Please get in touch with NPUK Communications Assistant Eleanor Taggart for more details and information on how you can get involved:
If you would like to find out more about the Niemann-Pick UK / International Niemann-Pick Disease Alliance please click the buttons below:
Rare Revolution Editor