Last Friday, I could walk!!! Ok, maybe not as independently as I would have liked, but I still completed the task which two years ago would have been unthinkable.
With the help of an exo skeleton (a machine I’ve been dreaming of using for over a year)
Since Friday, I have been making major efforts to get Histiocytosis known by society. I will not be satisfied that I have created the needed awareness until people say “Histiocytosis, I’ve heard of it”, until doctors see this disease as life changing as they do cancer, until Histiocytosis is no more an illness to be worried about because there are effective treatments to stop this disease progressing.
Today, Thursday 4th of June 2015 I met minister for health Leo Varadkar. I let him know of my presence and made him aware that what’s being done for Histiocytosis in Ireland is not enough.
I’m no longer upset or on the verge of tears at the thought of this because I believe there will be other methods to allow my independence back (exo skeleton for example).
What I do hope for, is that other people with this disease, that’s younger people, older people, people with life threatening conditions, people with more life limiting conditions get the attitudes they deserve from doctors to care enough to help them.