Rare disease day is fast approaching and the campaign is moving just as fast! There are 6000 diseases that have been identified. Many leave people face extremely long waits to diagnosis yet they can be extremely dangerous and frightening to handle once the diagnosis is made.
The aim of the day is not just to acknowledge that these conditions are out there but to get 'Equality in care' for everyone. Through experience with Pituitary Conditions and Addison's disease, I can vouch for this problem.
The main reason I want to highlight this day is to show how daily life can come to a challenging scenario in the build up and through diagnosis and care. It can seriously affect peoples mental health and therefore it's essential to support people beyond being given a 'label'. Through sport, exercise, craft, reading and contact with others life can change but is still often a demanding situation to find yourself in. Below is a link to a great study about how daily life is for the 'Rare Disease Community' This information could be immensely important through the year and beyond! So when working with people with a rare disease this information will give you some idea of what they are going through just to get by.
This is a great research paper about 'Juggling care and daily life The balancing act of the rare disease community' A Rare Barometer survey 2017
This isn't just for one day. The challenge they set themselves is to support and guide;-
'The 300 million people living with a rare disease around the world and their families face common challenges in their daily lives. As a vulnerable and neglected population they face social isolation.There are over 6000 rare diseases that are chronic, progressive, degenerative, disabling and frequently life threatening. Due to the rarity of each individual disease and scattered populations, expertise and information is scarce. In health systems designed for common diseases patients face inequities in accessing diagnosis, care and treatments'.
They go on to state that:-
'People living with a rare disease also face discrimination at work and school.
Download the full Information Pack here:
The factsheet can be found here;
The website has so much information and I hope that you find it helpful whether you are battling yourself or whether you are an employer, coach, mentor or carer.