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Thread: FSHD Awareness Campaign

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    FSHD Awareness Campaign

    Some have been wondering what's been taking Veil so long to get G5 out. Well...

    I've been recently diagnosed and genetically confirmed to have a form of MD, called facioscapulohumeral muscular dystrophy. FSHD is believed to be the 3rd most prominent variant of Muscular Dystrophy and is 70% inherited and 30% de novo. Mine is inherited meaning I have had it all my life and never have had it diagnosed. FSHD was only discovered as its own form of MD in the early nineties and the genetics, epigenetics, and pathogenesis is still not fully understood. Which means there are no known treatments and no known cure. Yet!

    It is currently believed to affect about 1 in 20,000 making it a rare disease. But not being fully understood and never diagnosed in children or adulthood until symptoms present themselves likely means that the true incident rates are higher.

    Which means that some members or visitors in our community have been or are being impacted by it possibly without their knowledge. Family, children, friends, etc.

    The disease has been taking a physical toll on me. I've lost the ability to run recently, have difficulty navigating stairs, fall when I walk unexpectedly and is possibly heading me to a wheel chair if I allow it to just take its course.

    For a time it's been the most terrifying experience in my life, robbing me the ability to do things that not so long ago one would take for granted. But I don't believe entirely in fate so I have been gifted with a new meaningful mission in life. One I believe will be fulfilled in my lifetime.

    To that end, I have aligned myself with some of the very best MDs and PhDs who share a passion to make a cure and help them in every way possible that I'm able, which includes to raise awareness amongst other positive efforts.

    My fate may be sealed, but that's only encouraging me to help others.

    I am in the process of creating a blog, Google places page and am on a mission to leverage the Internet to help raise awareness, improve diagnosis, create legislation, fund research, improve education, and find new people who are affected to increase the momentum of their noble pursuit.

    The new Blog is going to be called FSHD Lab Rat.

    The site address is: FSHD Lab Rat @ Google+ and it's related blog will be fshdlabrat.blogspot.com with the email being fshdlabrat@gmail.com.

    In part this blog will be chronicling my personal fight against this disease but more importantly will serve to educate and direct those who are affected who feel hopeless and without guidance as I initially felt.

    The title refers to the fact that I have been breaking the waves and not accepting the notion that those with FSHD can not weight train and strength train their way out of this debilitating disease.

    That's what I have been told by some. That I "can't" and that it may only make things worse for myself.

    I don't accept that notion, although I appreciate the expressed concerns. And so, I am embarking on a personal experiment to challenge the conventional wisdom and myself and give myself the possibility that I could be the exception that "proves the rule."

    If I can succeed (even partially) surely others can and will. If I do not, then I know I have given it my best shot. And will make another path.

    Hopefully the outcome of this "self-directed" research will help the cause whether I am personally successful at beating it or not. Either way, knowledge will be gained. Maybe new clinical research spawned from it.

    FSHD has just also been discovered to be potentially genetically connected to BPAD/Schizophrenia. I've also been diagnosed as having BPAD since my 20s which happens to be around the time FSHD started quietly creeping into my life without my knowledge. This is literally bleeding edge genetic research and modern psychology (behavioural genetics) and could point a way to a cure to a variety of genetically connected but seemingly disparate diseases that affect so many around the world.

    If you know of anyone strickened with MD/FSHD or has been presenting the classic, if only mild, symptoms please spread the word. And even if you don't. Please spread the word to help us raise awareness. Our collective reach will have a positive impact on others!

    In the meantime for those interested in understanding this particular challenge we are facing:

    https://www.fshsociety.org/pages/about.html

    Thanks guys!

    VG
    Last edited by Veil Guy; 10-21-2014 at 11:14 AM.

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    Re: FSHD Awareness Campaign

    Moved to Off-Topic, not suitable for the Announcements section. Thanks.


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    Re: FSHD Awareness Campaign

    Quote Originally Posted by xyd View Post
    Moved to Off-Topic, not suitable for the Announcements section. Thanks.
    Thanks Eric. Wasn't sure where it belonged. Please stick it?

    Bob

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    Re: FSHD Awareness Campaign

    Quote Originally Posted by Veil Guy View Post
    Thanks Eric. Wasn't sure where it belonged. Please stick it?

    Bob
    good luck Bob, I am sorta breathless hearing this and ONLY wish the best for you. Keep up the great attitude!!!
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    Re: FSHD Awareness Campaign

    I wish you all the best Bob.
    Always always always learning.

    www.VortexRadar.com



    If you have a question about radar detectors, could you please do me a favor and instead of asking via PM, ask here in the forum instead? Thanks!

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    Re: FSHD Awareness Campaign

    Quote Originally Posted by Veil Guy View Post
    Please stick it?
    It sounds odd, but I'm going to keep this thread unstuck - frankly, people ignore the stickied threads part of the thread listing - this is the main reason why I rarely rarely sticky threads in the announcements section. I think the best bet would be to keep this thread unstuck and simply bumped.

    We're with you in spirit.


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    Re: FSHD Awareness Campaign

    Wish you the best!
    Last edited by andresg; 10-20-2014 at 08:31 PM.


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    Re: FSHD Awareness Campaign

    Your positive attitude goes a long way in fighting this. That plus good self care and stress reduction helps to keep your immune system strong..and put this thing in remission. Positive thoughts and prayers coming your way.
    CRS 123
    Last edited by CRS123; 10-20-2014 at 09:04 PM.

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    Re: FSHD Awareness Campaign

    I'll keep you in my prayers. I wish you and your family/friends the best in this tough time. I hope that your good days are the best and your bad days are few and far between.

    Just keep rowing we're in this together.
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    Re: FSHD Awareness Campaign

    Best of wishes!




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