Monday, October 26, 2009

I Received Help in Spreading the Word About Dystonia

"On this day, at least one more person knows about this rare disorder called Dystonia. And for that, I am thankful."

Yesterday, I commented on a young woman's (her name is Nieya) blog in which she mentioned the story about the woman who had developed Dystonia after receiving the Flu shot.

Nieya commented that when she first saw the video footage of the young woman moving strangely, her instinct was to laugh, because it looked like a prank or joke. As I read further, she stated that she now realizes that the woman has Dystonia and that she prays for her recovery.

After reading her blog entry, I wrote a brief message on Nieya's blog about my experiences with Cervical Dystonia. I stated that more people are slowly becoming aware of this cruel disorder due to this unfortunate "Flu shot" incident and through media coverage about the disorder that has been on shows such as The Doctors, The Oprah Winfrey Show, The Today Show, and a few others. I also mentioned that I hope more research and funding will be given to this disorder and similar disorders.

This morning, I got a nice surprise that literally put tears in my eyes. I have an alert on one of my email accounts that will alert me to certain topics such as Dystonia. So, this morning, Nieya's blog popped up as one of my alerts.

So, I downloaded her blog. As I started reading her most recent entry, I noticed that she wrote about my comment to her. She discussed how she had not been aware of Dystonia (most people have never heard of it). She also mentioned how she researched the disorder and she encouraged her readers to read my blog to learn more about Dystonia.

In addition, she wrote me a very touching message regarding my spirit and courage.

I responded to her with a very warm message. I was very moved by her empathy. I was also impressed and thankful for her willingness to appeal to others to educate themselves about this disorder. She even placed a Dystonia Ribbon on her blog. Thanks!

1 comment:

Anonymous said...


i really appreciate your kind thoughts for writing about me..
trust me,
you have changed my life and make me more aware about this disease.
i am willing to give 100% support to spread this ignoble awareness..
Just keep holding on owhkay..
Your writings have given people the idea about the history regarding this disease.
I will always pray for your goodwill.. Keep writing..
take care