Monday, September 14, 2015

Dystonia Going Mainstream



Skip the content, get to the point? Sign the petition here: http://petition.dystoniaaware.org


It’s September again, so that means it is time to sign to Dystonia petition. The ultimate goal being- more awareness of the disorder so that we can eventually find a cure.  When I think back on my personal experience with dystonia, it makes me smile just a bit to see just how far we’ve come in under 10 years. 

When I was first ‘diagnosed’ my doctor told me to Google the disorder. I went home and did just that. What I found terrified me so much, that I decided at that exact moment, that I did not have dystonia.


I stumbled on the movie Twisted, and more specifically the story of Pat Brogan. As I looked down at my hand, the same one I had learned to live with not being able to use, I shook my head and thought: “meh, it’s not that bad.” 

So I turned down the Botox therapy, and continued to type or talk what I needed, and I truly thought that would be the end of it. 

Little did I know that five years later I would once again be diagnosed with dystonia, but this time it was not something I could ignore. As I sought out information, this time it led me to the Dystonia Medical Research Foundation. I used their sites to join patient groups, so that I could figure out what was going on with me. 

Eventually I met some pretty amazing people, including the same Pat Brogan that freaked me out 5 years prior.  As we carpooled together to DC to push for pro-dystonia legislation, I contemplated just how fast things had changed. 

In DC, my daughter and I spoke with my representatives, so that they could have a clear face attached to the bills they were signing into law. My daughter, 9 years old at the time, spoke eloquently on how dystonia affected her life, especially when I was physically unable to do things with her. 
My daughter made such an impression on the staff of DMRF that she was invited back to attend their annual families with dystonia conference. While there she met children with dystonia, learned some coping techniques, and had a little fun as well. 

I, on the other hand, was able to meet another internet hero I stumbled across online – Jason Dunn, dystonia advocate.  I can’t remember how we exactly met, but I believe he found me on Facebook via mutual online patient group friends. Jason had a dramatic homemade video on YouTube, that displayed his condition clearly- it was one that nearly every dystonia patient had seen. 

Jason was just as amazing in real life, and our short time together was captured in a short clip on National Geographic.. but here's the entire episode =) 




These are just a few of the amazing people that are continuing to push for dystonia awareness. There are many others including Noel Valero, who also shared his story online, held a dystonia sign on the Today show, and actively advocates online; Dawn Brinkley, former Miss North Carolina and Rogers Hartman, who appeared on Oprah.  They have made huge contributions, but they are just a few – we can do so much more as a combined force. 

That is why I encourage you to sign this petition- because the patients and their families should not be the only ones that have heard of dystonia. You should sign this petition to support the brave efforts of the patient advocates who constantly seek ways to bring attention via the media. You should sign the petition so that medical professionals feel obligated to increase their understanding.  You should sign this petition to benefit humanity. 

If that last reason sounds dramatic to you, it’s probably because you haven’t met 100s of people who suffer, mostly because of the lack of medical knowledge/access to care. We can beat this America, but we have to show the world that we care.

Image Credit: Jason Dunn and the secret service agent that let him keep this awesome picture.
   
We all can't shake the President's hand, but we can all get his attention. 
 
  
Sign the petition here: http://petition.dystoniaaware.org




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