Mike Koutis, who lives in Winnipeg, Canada, wrote this message on Facebook: it gives an honest and heartfelt view of life with NA: My name is Michael Koutis. My goal is to bring awareness to a disease of which so little is known. It is isolating and lonely for me and my brother (yes, he has it as well). Unlike an accident where the changes are sudden and immediate, a disease can take its time claiming one’s body. The changes are terrifying, somewhat fascinating, but mostly surreal. Although I am trapped in my body as it deceives me, it sometimes feels like an out of body experience, if that makes sense?

I don’t ask for pity, I ask for practical advice on raising awareness where it counts the most, with you, my government, who can bring about change through research, and raise hope for a couple of guys who need it the most.

Here is my story.

At age 36 I was a “normal” healthy, happy guy. I had a rewarding career as a teacher, was happily married and looking forward to a bright future. Suddenly, out of nowhere, I began to make unfamiliar and strange sounds with my throat. This was the beginning of my journey.

I don’t know how many doctors I visited or how many tests I endured without results, but they seemed endless and futile. One by one better known, or more common diseases were ruled out, to them I was a medical mystery! Five years into my journey I was finally diagnosed with the extremely rare degenerative disorder called Neuroacanthocytosis (NA).

I am now divorced, unable to work, collecting a meagre but most appreciated disability insurance and living in a nursing home.

My symptoms include vocal and facial tics, extreme fidgeting, and biting down on my tongue to the point where it has changed shape. I have had teeth removed in the hope of alleviating pain and further damage. I am unable to walk on my own or feed myself. I fling myself at walls (odd but true) and cannot sleep more than a couple of hours at a time….oh how I wish I could.

Sleep deprivation can play nasty tricks on one’s mental and emotional state, and is as difficult to endure as my physical symptoms. I take Lorazepam, Tetrabenazine, Haloperidol, Amitriptyline, and Diazepam to try to control my movements and help me sleep. Even with all of this swimming through my system, I wear a helmet and have had every table corner and hard surface padded, to prevent injury when I thrash or fall. Life expectancy is 10-20 years from onset, which may sound generous but I am eight years in and feeling very much aware of time, and my need to act.

Sure, I have down days, one of the worst was when I had to tell my parents of my disorder and all that it will take from me, but because of their love and support, and that of my friends, I am usually smiling and happy. There is a support group out there to help us cope, and that is necessary, but I would like to ask my Government for its support to somehow, some way find a cure or treatment for my foe…..Neuroacanthocytosis (NA).

I don’t know how a disease like NA, which affects relatively few, ever gets noticed, but if there is a way to simply ask for help….this is my plea. To know that someone has heard me, and might share my story with others, gives me (and my brother) hope that someday, someone might be working on finding a cure.

Thank you.