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




17 comments:

  1. As a sign of gratitude for how my husband was saved from cervical dystonia/spasmodic torticollis, i decided to reach out to those still suffering from this.
    My husband was diagnosed of cervical dystonia/spasmodic torticollis in 2013 and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, he always have Joint pain , and he always complain of Weakness of the body . we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and he left the contact of the doctor who had the cure to cervical dystonia/spasmodic torticollis . I never imagined cervical dystonia/spasmodic torticollis has a natural cure not until i contacted him and he assured me my husband will be fine. I got the herbal medication he recommended and my husband used it and in one months he was fully okay even up till this moment he is so full of life. cervical dystonia/spasmodic torticollis has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony.

    ReplyDelete
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    ReplyDelete
  3. Dear FRIENDS,
    now i have a beautiful smiling face and so are which you all, after reading my testimony. My name is kate, I am 31 years old,
    And live with my boyfriend in Belgium, but I am UK. I was diagnosed in 2012 with cervical dystonia/spasmodic torticollis. Doctors told me this condition was forever. I know how you feel and what you are going through, I don't have a baby though. I just want to tell you that I am cured now,with the help of doctor williams herbal medication, the last time I can remember having cervical dystonia was in the summer of 2016. It was a long and difficult process but I am so thankful to dr williams I don't have it anymore. Please know you can be cured too. Accept what happened and is happening to you, forgive, let the past go, love yourself and others unconditionally and be thankful. Everything happens for a reason. If you want to be in contact with dr williams and share your own testimony and thoughts feel free to e-mail him on; drwilliams098675@gmail.com for advice and for his product.

    Reply

    ReplyDelete
  4. Thanks to Dr Williams I am so mush happy today, I have been suffering from dystonia for the past 8 years now, and i have spent a lot on western drugs which has all proved abortive, i have tried all means in life to become dystonia free , but there was no answer until i decided to try herbal solution and i found Dr Williams online and i contacted him and after I took his medication as instructed, i am now completely free from dystonia within one month of usage, i am so much happy, thanks to Dr Williams for helping me get my life back again without any form of crisis, i promise to tell your name and good deeds to the whole world,if you have dystonia you can email him on drwilliams098675@gmail.com for advice and for his product.

    ReplyDelete
  5. I am Karen from Canada, I once suffered from cervical dystonia,for more than 30 years , the doctor told me there was no permanent cure i was given medications to slow down its progress, i constantly felt my health was deteriorating as i constantly had jerky head movements and muscles contract ,this ailment was really terrible especially when am going out with my friends, i have this constant disorder for about 30 years, this was really a terrible ailment ,on thin one day that i was going through the internet,and i came across a post of Mrs Jessica on how her daughter was been cured from cervical dystonia through the help of Dr Williams herbal product, I contacted this herbal doctor via his email and explain everything to him and make purchase of his product,few days later he sent me the herbal medicine through courier service, when i received the herbal medicine, i used it for 1 months as prescribed by Dr Williams and i was totally cured within those week of usage,on thin now i have not experience any sign or characteristics again for more information you can email him on drwilliams098675@gmail.com for help

    ReplyDelete
  6. As a sign of gratitude for how my son was saved from dystonia , i decided to reach out to those still suffering from this.
    My son suffered dystonia and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony of so many people who was cured from dystonia and so many other with similar body problem, and they left the contact of the doctor who had the herbal cure to dystonia . I never imagined dystonia has a cure not until i contacted him and he assured me my son will be fine. I got the herbal medication he recommended and my son used it and in one months he was fully okay even up till this moment he is so full of life. dystonia has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony .

    ReplyDelete
  7. ALL THANKS TO DR WILLIAMS FOR THE GREAT DEED HE HAVE DONE FOR MY DAUGHTER?
    My daughter suffered from dystonia for more than 7 years which we started experiencing in her when she turned 4 year and 5 months we all thought it will end but got even worse as days went by. We tried all several treatments and therapy prescribed by various doctors we met but to no avail, she lost total concentration and always complain of neck discomfort . She usually tells me she haves jerky head movements . This were steady disorder that disrupted her entire life, even at night she slept less because of this.It was during a casual conversation with a friend that i learned about Dr Williams herbal medicine I was able to contact him on his email address. and give him all the necessary information that he needed,few day later he sent me the herbal portion and his medicine was able to restore her back to normal and she is very okay now without any side effects whatsoever. If you have dystonia , do not hesitate to contact him on drwilliams098675@gmail.com for advice and for his product. I hope this also helps someone out there.

    ReplyDelete
  8. Thanks to Dr Williams I am so mush happy today, I have been suffering from cervical dystonia for the past 8 years now, and i have spent a lot on western drugs which has all proved abortive, i have tried all means in life to become dystonia free , but there was no answer until i decided to try herbal solution and i found Dr Williams online and i contacted him and after I took his medication as instructed, i am now completely free from dystonia within one month of usage, i am so much happy, thanks to Dr Williams for helping me get my life back again without any form of crisis, i promise to tell your name and good deeds to the whole world,if you have dystonia you can always go through his website on drwilliams098675@gmail.com for more information ..

    ReplyDelete
  9. I am Shelley from Los Angeles,California, I want to testify on how i got cured from cervical dystonia, I have suffered from cervical dystonia since the year 2011 with so mush pain,that i have to spend so mush money getting pain relief in the hospital, and I have visited several doctor ,but all to no avail, my world was gradually coming to an end because of the constant muscle contractions and pain , until i saw a post in a health forum about a herbal Dr Williams who use herbal portion in curing people from different kind of diseases including dystonia, at first i doubted if it we be able to cure me, but i decided to give it a try, when i contacted this herbal doctor via his email, he prepared a herbal portion and sent it to me via courier service, when i received this herbal medicine, he gave me step by step instructions on how to apply it, when i applied it as instructed, i was completely free from dystonia just for 1 months of usage,i we recommend this to all my friend family in the world today who still suffering from dystonia you can contact him through his email on drwilliams098675@gmail.com for help.

    ReplyDelete
  10. Dear FRIENDS,
    now i have a beautiful smiling face and so are which you all, after reading my testimony. My name is kate, I am 31 years old,
    And i live with my husband in Belgium, but I am from UK. I was diagnosed in 2012 with cervical dystonia. Doctors told me this condition was forever. I know how you feel and what you are going through, I just want to tell you that I am cured now,with the help of doctor williams herbal medication, the last time I can remember having cervical dystonia was in the summer of 2016. It was a long and difficult process but I am so thankful to dr williams I don't have it anymore. Please know you can be cured too. Accept what happened and is happening to you, forgive, let the past go, love yourself and others unconditionally and be thankful. Everything happens for a reason. If you want to get in contact with dr williams and share your own testimony and thoughts feel free to e-mail him on; drwilliams098675@gmail.com for advice and for his product.

    ReplyDelete
  11. Dear FRIENDS,
    now i have a beautiful smiling face and so are which you all, after reading my testimony. My name is kate, I am 31 years old,
    And i live with my husband in Belgium, but I am from UK. I was diagnosed in 2012 with cervical dystonia. Doctors told me this condition was forever. I know how you feel and what you are going through, I just want to tell you that I am cured now,with the help of doctor williams herbal medication, the last time I can remember having cervical dystonia was in the summer of 2016. It was a long and difficult process but I am so thankful to dr williams I don't have it anymore. Please know you can be cured too. Accept what happened and is happening to you, forgive, let the past go, love yourself and others unconditionally and be thankful. Everything happens for a reason. If you want to get in contact with dr williams and share your own testimony and thoughts feel free to e-mail him on; drwilliams098675@gmail.com for advice and for his product.

    ReplyDelete

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