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Home Health Wellness A Woman's Journey to Raise Dystonia Awareness

A Woman's Journey to Raise Dystonia Awareness

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womans-journey-to-raise-dystonia-awareness How hard could it be to collect 100,000 signatures in 30 days?

That is the question the dystonia community is asking themselves this month as they attempt to gather 100,000 signatures for a petition asking the White House to officially recognize September as Dystonia Awareness Month (official poster above).  

Dystonia is a neurological movement disorder that causes muscle spasms, tremors, and awkward, often painful, body contortions. While most people have never heard of dystonia, it is more common than Huntington's Disease, Muscular Dystrophy, and ALS. 

There is no cure, treatment options are limited, and lack of awareness often leads to delays in diagnosis. By having an officially recognized awareness month, the dystonia community hopes to reduce the wait time for diagnoses and increase funding for research.

Treacy Henry, 31, is leading the social media outreach for the dystonia awareness petition and has been pushing hard for each and every signature. This can get tough at times when she has no control of her body, a common and harsh characteristic of dystonia. 

She is one of half a million people who is affected by the third most common movement disorder. Treacy explained her life with dystonia in a 2011 video you can view here.

Video of Henry discussing life with dystonia (left), and her participating in the Dogs for Dystonia Virtual Walk (right). 

Henry spoke to WomensForum about why this petition matters so much to her and others living with it along with those working hard to research and develop better treatments for dystonia. 

Henry was 16 when dystonia began to affect her body and life, and she's had to modify much of her daily tasks due to it. Simple interests such as reading, quilting or drawing are not easy as her head will tilt or hand will shake - all out of her control. 

Despite the hardships that come with disorder, Henry has been working tirelessly through September alongside many others to raise awareness for dystonia. Gaining enough signatures for the petition would be a great success for the dystonia community. 

"With a nationally recognized month for dystonia, we would get things like schools and health classes involved and learning about it. When you have an awareness month, you can have more events, fundraising, and research – all which dystonia needs.

You can ask people to support dystonia but if they have never heard of it before, it is really hard. Having an officially recognized awareness month by the government for dystonia would be a major help. This is all the more reason to sign the petition and help get people talking about it, learning about it and working with us to find treatments and help those living with dystonia."

When speaking with Henry, she explained just how hard it is to get those 100,000 signatures. Though some notable names have come forth in support of the petition, such as Montel Williams and MasterChef's Jaimee Vitolo, it still needs over 85,000 signatures in the next 10 days to reach its goal. 

"In January, a petition was created asking the U.S. to deport Justin Bieber and revoke his green card. This petition received over 273,000 signatures. So 273,000 people took the time to sign a petition that had no chance of ever being enforced just to show their dislike for a pop-star."

Henry hopes that that many people, or even just 85,000, can take the time to sign a petition that will help hundreds of thousands of people. 

You can sign the dystonia petition here: wh.gov/lh5aj 
Learn more about dystonia and awareness efforts here: dystoniaaware.org

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