STORIES OF (H)OPE, (L)EGACY, AND (H)EROES
Alright, friends. Today I am writing an important post, focusing on a subject that I view with great passion. I have been sick for nearly ten years, facing rare diseases that in many ways have taken a lot away from me. But despite all that, I have been abundantly blessed, as my faith has matured in unique and meaningful ways, and I have formed friendships with some truly remarkable people. Additionally I have gained perspective and knowledge about my baffling illnesses that I would have greatly valued at the outset of this crazy journey.
So I have this itch for outreach, for raising awareness in order to help others who suddenly find themselves in a cataclysmic situation full of long scary words, painful needle pokes, yucky hospital smells, and blinding white lights. I hope to raise awareness so that together in conjunction with the endeavors of so many others, we can move toward conquering these rare illnesses that have taken way too much from far too many.
Many of these diseases already have a week or a month devoted to awareness that can help give my efforts some structure, but because of the unpredictability of my life, it has proven to be impossible for me to synchronize my watch to that schedule! September was a month full of awareness opportunities for many issues I care about from mitochondrial disease, to invisible illnesses, to HLH. However this past September, as well as October for that matter, was also a wildly hectic time in my life from a medical standpoint! I intend to bring attention to each of these causes in due time… But it won’t all happen today. I’m just going to have to improvise the schedule a bit. Capeesh? It is what it is!
CAN WE REALLY MAKE A DIFFERENCE? YOU BET WE CAN!!!
It is probably both safe and sad to say that most all of us have been affected by cancer in some way, whether we have battled it ourselves or have supported a loved one through their illness. Last month I came across bunches of gold awareness ribbons bringing attention to the important fact that September is Childhood Cancer Awareness Month. This most honorable cause has increased funds for valuable research, helping to optimize cancer treatments.
Now, if you could stretch your memory way back to September, how many ROYAL BLUE ribbons do you recall seeing?
I’m supposing for most of you the answer is zero. But guess what! September also happens to be Histiocytosis Awareness Month. Did no one tell you? As a Hemophagocytic Lymphohistiocytosis (HLH) patient myself, I’m here to fill you in as to why those aforementioned blue ribbons are so special to me. Your crash course in the importance of being “Histio aware” begins right now!
