Selfies For Histiocytosis

My #nomakeupselfie, in the hopes to raise awareness for a rare, cancer like condition called LCH. #cancerawareness

(I realise I look like a total grump in this picture, but I didn’t want to come across as smiley smiley, as if I’m happy with how this condition has affected my life.)

2014-03-20 19.41.18

Although the condition I have is not life threatening, it sure as hell is life changing. From a life of freedom, without worry for my mobility and independence, my life was turned upside down when this disease effected my cerebellum. LCH is unfortunately not the only condition which stems from the disease Histiocytosis. There are other life threatening conditions, such as HLH and PLCH. These conditions HAVE taken the lives of others, yet they all remains unknown because of its rarity.

This, for me is not an acceptable excuse, that little research is being applied for the discovery of a cure because “it isn’t common enough.” It is classed as an orphan disease and gets no funding by the government for its research. What about the people who are affected? Are we meant to endure and deal with these problems caused by this disease alone, on our own, with insufficient research because it’s not common enough to be considered as important?

I feel neglected by most of the medical world, for their disinterest in this rare, and in my case, life changing illness. The only way this can change is by the generosity and the compassion of the general public.


To donate to the Histiocytosis Research trust, please text THRT13 £5 to 70070 – UK habitants Irish habitants

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