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Dystonia

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Learn why this Viral Message is so Important

  • Post author:Rebekah
  • Post published:September 22, 2015
  • Post category:Dystonia/Rare Disease

Meet Brittany! Brittany was disheartened after going to a restaurant and having the waitress completely ignore her when Dystonia made it difficult for her to enunciate. After first relocating to…

Continue Reading Learn why this Viral Message is so Important
Editor’s Choice Weekend Roundup: 9-18-15

Editor’s Choice Weekend Roundup: 9-18-15

  • Post author:Patient Worthy Contributor
  • Post published:September 18, 2015
  • Post category:Acromegaly/Dystonia/Homozygous Familial Hypercholesterolemia

Check out and pass along the Editor's Choice articles of the week! [one_half] [/one_half] [one_half_last] This is Why People Are Shakin’ It for Dystonia Awareness Month When dystonia leaves you…

Continue Reading Editor’s Choice Weekend Roundup: 9-18-15
This Man Responds Perfectly When Dystonia Tries to Destroy His Passion

This Man Responds Perfectly When Dystonia Tries to Destroy His Passion

  • Post author:Patient Worthy Contributor
  • Post published:September 16, 2015
  • Post category:Dystonia/Rare Disease

His Dad played alto Sax, but Neal played drums. And when I say played drums, I mean like nothing you've ever seen before! Those around him were in awe.  As…

Continue Reading This Man Responds Perfectly When Dystonia Tries to Destroy His Passion
This is Why People Are Shakin’ It for Dystonia Awareness Month

This is Why People Are Shakin’ It for Dystonia Awareness Month

  • Post author:Patient Worthy Contributor
  • Post published:September 16, 2015
  • Post category:Dystonia/Rare Disease

Show us your moves, dystonia patients, show us your moves. At least, that’s what Pat Wyatt’s doing, according to a recent article published in the Shelby County Reporter. Wyatt has…

Continue Reading This is Why People Are Shakin’ It for Dystonia Awareness Month
This Mother’s Love is Unmatched After Tragedy Struck Her Children

This Mother’s Love is Unmatched After Tragedy Struck Her Children

  • Post author:Patient Worthy Contributor
  • Post published:September 15, 2015
  • Post category:Dystonia/Rare Disease

For Shannon, a loving momma and avid blogger, the lyrics posted on her blog page, For Waverly. For Oliver. For a cure., are words she couldn’t wish truer: I want…

Continue Reading This Mother’s Love is Unmatched After Tragedy Struck Her Children
This Couple Needs Your Help to Save Neglected Veterans

This Couple Needs Your Help to Save Neglected Veterans

  • Post author:Patient Worthy Contributor
  • Post published:September 14, 2015
  • Post category:Dystonia/Rare Disease

10 years ago, Donna Driscoll was going about her life quite happily--she taught, was an avid tennis player, and started making plans for the future. The Connection Newspaper reports how…

Continue Reading This Couple Needs Your Help to Save Neglected Veterans
Editor’s Choice Weekend Roundup: 9-11-15

Editor’s Choice Weekend Roundup: 9-11-15

  • Post author:Patient Worthy Contributor
  • Post published:September 11, 2015
  • Post category:Ankylosing Spondylitis/CGD/Dystonia/GLUT1 DS/Primary Immunodeficiencies

Check out and pass along the Editor's Choice articles of the week! [one_half] [/one_half] [one_half_last] 5 Ways Your Butt Can Save a Life If you thought your jeans were only…

Continue Reading Editor’s Choice Weekend Roundup: 9-11-15
This Drummer’s Response to Dystonia is Worthy of a Solo

This Drummer’s Response to Dystonia is Worthy of a Solo

  • Post author:Patient Worthy Contributor
  • Post published:September 7, 2015
  • Post category:Dystonia/Rare Disease

Imagine you're a drummer in a popular band. Every time you sit down behind your drum kit, grab your sticks and queue up the music, the rhythm just flows out…

Continue Reading This Drummer’s Response to Dystonia is Worthy of a Solo
#DystoniaAwareness Guest Blogger Pamela: Life Before Dystonia

#DystoniaAwareness Guest Blogger Pamela: Life Before Dystonia

  • Post author:Patient Worthy Contributor
  • Post published:September 3, 2015
  • Post category:Dystonia/Rare Disease

As we join in the #DystoniaAwareness movement to make September the official month to support the Dystonia community, we will be posting blog posts from the Dystonia Muse herself, Pamela…

Continue Reading #DystoniaAwareness Guest Blogger Pamela: Life Before Dystonia
It’s Dystonia Awareness Month, So Grab a Bike Like This Dude

It’s Dystonia Awareness Month, So Grab a Bike Like This Dude

  • Post author:James Stone
  • Post published:September 3, 2015
  • Post category:Dystonia/Rare Disease

When Dystonia has got you down, just ride on. The UK site, DorsetEcho, reports that's Andrew Beale’s approach. Beale will cycle 33 miles through the streets of the United Kingdom…

Continue Reading It’s Dystonia Awareness Month, So Grab a Bike Like This Dude
All Dystonia Patients Win When This Country’s Civil War Ends

All Dystonia Patients Win When This Country’s Civil War Ends

  • Post author:Patient Worthy Contributor
  • Post published:September 3, 2015
  • Post category:Dystonia/Rare Disease

Imagine you live in New York City and a procedure that could save your life could only be conducted in Los Angeles. Well rationally you would just take a plane…

Continue Reading All Dystonia Patients Win When This Country’s Civil War Ends
This Is How You Respond To Your Child’s Chronic Illness

This Is How You Respond To Your Child’s Chronic Illness

  • Post author:Patient Worthy Contributor
  • Post published:September 2, 2015
  • Post category:Dystonia/Rare Disease

Tyler Staab was like any other seven-year-old boy—energetic, rowdy, and super interested in sports and playing outside. But in February, 2005 his whole world changed, and that of his parents.…

Continue Reading This Is How You Respond To Your Child’s Chronic Illness
Join Us To Make September Dystonia Awareness Month!

Join Us To Make September Dystonia Awareness Month!

  • Post author:Patient Worthy Contributor
  • Post published:September 1, 2015
  • Post category:Dystonia/Rare Disease

Did you know September is Dystonia Awareness month! It's in the process of becoming nationally recognized, all it needs is your signature! Sign the petition, visit Dystoniaaware.org, or watch their video…

Continue Reading Join Us To Make September Dystonia Awareness Month!
This Sick Little Girl Goes Viral for All the Right Reasons

This Sick Little Girl Goes Viral for All the Right Reasons

  • Post author:Patient Worthy Contributor
  • Post published:August 27, 2015
  • Post category:Dystonia/Hypomyelination with atrophy of basal ganglia and cerebellum/Rare Disease

Ciara and Billy Nichol, who live in northwestern Ireland, were overwhelmed when a cry for help went viral. Their daughter, Ellie, suffers from one of the rarest diseases in the…

Continue Reading This Sick Little Girl Goes Viral for All the Right Reasons
This Dance Partner Gives the Devil a Run for His Money

This Dance Partner Gives the Devil a Run for His Money

  • Post author:Patient Worthy Contributor
  • Post published:August 27, 2015
  • Post category:Dystonia/Rare Disease

What comes to mind when you think of dancing? Blushing ballerinas? Fred Astaire cutting rugs with Ginger Rogers? Dancing Chihuahuas? Far be it from me to criticize either mental image,…

Continue Reading This Dance Partner Gives the Devil a Run for His Money
Rare Odds Devastate Newborn, Luckily His Mom is Awesome

Rare Odds Devastate Newborn, Luckily His Mom is Awesome

  • Post author:Patient Worthy Contributor
  • Post published:August 26, 2015
  • Post category:Dystonia/GLUT1 DS/Rare Disease

When a doctor says it’s necessary to do a lumbar puncture on your two-year-old son, momma bear instincts kick in. Health News Digest reports that’s what doctors recommended when Lisa…

Continue Reading Rare Odds Devastate Newborn, Luckily His Mom is Awesome

This Woman Will Make You Stop Complaining About the Gym

  • Post author:Patient Worthy Contributor
  • Post published:August 25, 2015
  • Post category:Dystonia/Rare Disease

In this blog posted to the Michael J. Fox Foundation for Parkinson's Research website, retired attorney Allison London, who also has dystonia, talks about the gifts that come with having…

Continue Reading This Woman Will Make You Stop Complaining About the Gym
This Man Proves Paralympians are the Best Athletes

This Man Proves Paralympians are the Best Athletes

  • Post author:Patient Worthy Contributor
  • Post published:August 24, 2015
  • Post category:Cystinosis/Dystonia/Rare Disease

On August 17, 1999, Ian Kent woke up with a gnarled body. "Two years later I learned to walk again," he told the Toronto Star. Kent had been a competitive…

Continue Reading This Man Proves Paralympians are the Best Athletes
Editor’s Choice Weekend Roundup: 8-22-15

Editor’s Choice Weekend Roundup: 8-22-15

  • Post author:Patient Worthy Contributor
  • Post published:August 20, 2015
  • Post category:Ankylosing Spondylitis/Dystonia/GLUT1 DS/HAE

Check out and pass along the Editor's Choice articles of the week! [one_half] [/one_half] [one_half_last] This Mom Will Make You Want to Hug Every Teacher A teacher who already has…

Continue Reading Editor’s Choice Weekend Roundup: 8-22-15
Stomping on Dystonia for Fun and Inspiration
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Stomping on Dystonia for Fun and Inspiration

  • Post author:Patient Worthy Contributor
  • Post published:August 14, 2015
  • Post category:Dystonia/Rare Disease

Dystonia May Slow Her Body, But It Can’t Stomp Her Spirit Few times in life are as exciting—or as hectic—as the last days of high school. Between friends and classes,…

Continue Reading Stomping on Dystonia for Fun and Inspiration

On the Gridiron of a New Field: Dystonia Awareness

  • Post author:Patient Worthy Contributor
  • Post published:August 14, 2015
  • Post category:Dystonia/Rare Disease

Before a hit and run driver struck Pat Brogan as he rode his bicycle, he'd never heard of dystonia, a brain disorder that causes severe muscle cramping and pain. But…

Continue Reading On the Gridiron of a New Field: Dystonia Awareness

American Hero Dogs – They’re Not Just for Walking

  • Post author:Patient Worthy Contributor
  • Post published:August 13, 2015
  • Post category:Dystonia/Rare Disease

The Working Dog: Service Dogs Go for the Gold While the 2016 Presidential campaigns get underway, Americans are taking to the polls to vote for their favorite finalist in the…

Continue Reading American Hero Dogs – They’re Not Just for Walking
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