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