Happy new year everyone!! Here we are at the start of 2015 and ready to begin the year afresh. The ending of the year is exciting times for everyone, me included. I hope to have many fundraiser and awareness events for Histiocytosis and to get the word out there for everyone to have the same attitude towards rare diseases as towards more common ones as they .
The last fundraiser, and first national awareness event was very successful for raising funds and for putting Histiocytosis on Ireland’s radar.
The fundraiser has come and passed and gone from people’s minds.
I cannot forget about this disease; I cannot forget about the damage it has done, not only to my health but to my life. While most people have forgotten my story, it will hang with me for the rest of my life, for as long as I go without a cure, a treatment I will endlessly worry about what further deterioration lies ahead. I am constantly reminded of the sacrifices this disease has most recently coerced me into every second I live.
I’m facing this disease and the damage it’s doing alone, with very little help. No governmental funding for research and little donations from the public as a result of small exposure.
My worries can’t be forgotten over the few months of distraction or excitement of the new year