Rare disease day is on the rarest day, February 29th, there is a lot to be said about living with a rare disease and unsurprisingly, its not entirely a positive experience. ACC is classified as a rare disease, 1 in 1 million people will be diagnosed with ACC annually, and probably, like myself, pre-diagnosis there is a high chance that you had never even heard of ACC until it in some way came into your life.
Having a rare disease is scary, and can feel lonely, for many reasons. Of course, every illness comes with its own set of challenges but I have found that when its rare, there is a very unique set of challenges that comes with it.
A rare disease is classified as such when it affects fewer than 1-2000 people, so I definitely fit into that category, technically twice, as I have both ACC and NF1!!
On this rare disease day I would like to share some resources that give some good information about living with a rare disease more generally, but also living with ACC, and, as I was lucky enough to be selected to write a piece for ACC Support UK, I have also shared this to highlight the particular challenges that can be faced.
finally a little something I wrote for ACC UK
The ACC diary 
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