Today is Rare Disease Day and I have started to put together these ‘samples’ for sharing, in hope that they will get people talking about the chronic illness!
Please share freely: The purpose of Rare Disease Day 2018 is to raise awareness, with policy makers and the public, of rare diseases and of their impact on the lives of patients, and to reinforce their importance as a public health priority.
During the difficult process of getting diagnosed last year, I was told that some of the conditions I was presenting with (POTS, hEDS & MCAS) were ‘rare’ and ‘unlikely’.
But these conditions are not really rare! They are rarely discussed or diagnosed and in desperate need of becoming a pubic health priority: