Friday, December 9, 2011

My Interview With the Media About Dystonia




Hi peeps!!!!  Alright folks, a blessing is unfolding right before my eyes.  It's amazing!!!  As you all know I have Dystonia, a neurological movement disorder.  I have a variant of  what is called Segewa's Disease or Dopa Responsive dystonia.  The crazy thing is my body is not responding to the standard therapy and my disease has been progressing rather rapidly.  After approaching the media for help, I was interviewed by the local news in my area.  Check it out here!  I was rather reluctant to put myself out there.  I didn't want to shame my children, most of my family members have not even see me in such a state.  But then I began to think about this horrible genetic disease and the possibility of my children inheriting it and realized for their sake I must speak out.   Their is such a stigma with Dystonia, that has to be changed.  Although many people have various forms of Dystonia, it is a generally unheard of disease.  You would not believe how many physicians I have to "school" on the disease on a regular basis.  Well  as a result of my interview, I have been contacted by the most awesome people.  People ready to give encouragement, share their journeys and reach out in any way they can.  This alone has been such a blessing, but that's not all!  I see a breakthrough coming soon!!  So keep posted friends you will be the first to know what unfolds!

3 comments:

  1. I just noticed your comment regarding an Easter post I wrote - so I thought I'd head over to visit you. I have never heard of Dystonia, but have so many different people in my life who have "thorns" in their life that just make daily life a battle. I will pray for you - that a cure can be found and for your condition to stop its progression (and reverse direction). Reading about your neighbor and her similar battle made my heart melt, how richly God blessed you with each other to relate in a way so few others could.

    I look forward to reading more about your journey....and of course for some good baking inspiration!

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  2. StephieAnne, thanks for stopping by!! I really enjoyed your blog as well and thanks for the encouragement!!!

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  3. That is awesome. I am curious as to what it is too. I am about to watch your interview!

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