As far as I know, there are only three other people in Ireland who suffer from conditions resulting from Histio. I am the only person in Ireland who suffers from a neuro degenerative mobility condition, after being re-diagnosed at 13 years old.
I am determined to make this disease a national recognition, to build the awareness and funding needed to eventually find a cure for not only my condition, but for the many other complications this disease can cause. But because of the small minority effected, I find it extremely difficult to get my voice heard, to get the attention from those who are not affected by this disease, for them to empathise with my story and help me spread the word.
Just because this disease is rare, and because my condition is not life threatening, doesn’t mean it should be ignored. What if it was you, your child, or your family member dealing with this life altering condition? Could you rest knowing so few people know about this disease; year by year seeing your limbs slowly fail and give up on you, knowing there is little you can do about it because there is not enough research for a cure or treatment. That has been the reality of my life for the past seven years.
Why has it taken this long to still be pleading for necessary awareness? Has my journey in life not been a good enough example of the horrendous damage that this disease can cause. For me to deteriorate to this level and to have to experience tremendous heartbreak and loss to understand its destruction; yet still, hardly any awareness has been achieved in Ireland. Is it because I’m not young, or dying?