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dystonia

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This Man Believes in a Dystonia Cure. Do You?

  • Post author:Kiki Jones
  • Post published:November 17, 2015
  • Post category:Dystonia/Rare Disease

He’s been featured on the National Geographic Channel. He’s shaken hands with President Obama. He’s been stopped by the secret service. Even after all of that, Jason Dunn keeps going, and he’s taking his dystonia with…

Continue Reading This Man Believes in a Dystonia Cure. Do You?
This Little Girl with Dystonia Needs Your Help Right Now
This little girl with dystonia needs your help!

This Little Girl with Dystonia Needs Your Help Right Now

  • Post author:James Ernest Cassady
  • Post published:November 13, 2015
  • Post category:Dystonia/Rare Disease

How much do you think the average five-year-old girl weighs? According to kidshealth.org, the answer is about 45 pounds. Now, how much do you think a wheelchair for that same…

Continue Reading This Little Girl with Dystonia Needs Your Help Right Now
How to Stimulate Your Brain to Treat Dystonia
Can brain stimulation help dystonia symptoms?

How to Stimulate Your Brain to Treat Dystonia

  • Post author:Farrah Fontaine
  • Post published:November 12, 2015
  • Post category:Dystonia/Rare Disease

Just because Halloween has passed doesn't mean we're done talking about brain surgery. Specifically, deep brain stimulation therapy. No, this isn't something like Frankenstein's monster. Deep brain stimulation therapy is…

Continue Reading How to Stimulate Your Brain to Treat Dystonia
This Man’s Daring Destiny: Dystonia And Tennis
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This Man’s Daring Destiny: Dystonia And Tennis

  • Post author:Farrah Fontaine
  • Post published:November 12, 2015
  • Post category:Dystonia/Rare Disease

Who knew that dystonia and tennis go hand-in-hand?! For twenty-year-old Josh, it's a match made in heaven. He's been fascinated with tennis his whole life and refused to let dystonia…

Continue Reading This Man’s Daring Destiny: Dystonia And Tennis
Magic Strikes Twice: A New Breakthrough Connects Dystonia and Parkinson’s

Magic Strikes Twice: A New Breakthrough Connects Dystonia and Parkinson’s

  • Post author:Kiki Jones
  • Post published:November 6, 2015
  • Post category:Dystonia/Rare Disease

We recently posted an article discussing the positive connections between dystonia and depression (and Harry Potter, oddly enough). That was just one instance where researchers were finding interesting new treatment…

Continue Reading Magic Strikes Twice: A New Breakthrough Connects Dystonia and Parkinson’s
Trump This?! Obamacare to the Rescue. Seriously.

Trump This?! Obamacare to the Rescue. Seriously.

  • Post author:Alisha Stone
  • Post published:November 3, 2015
  • Post category:Dystonia/Rare Disease

Let’s face it. Every now and then, you run across an article that makes ya wanna go, “Whaaaa?” And this is the perfect example. Apparently, a bunch of research analysts…

Continue Reading Trump This?! Obamacare to the Rescue. Seriously.
Guess What This Guy is Doing for Dystonia with 45,000 Bucks?

Guess What This Guy is Doing for Dystonia with 45,000 Bucks?

  • Post author:Winnie Nash
  • Post published:November 2, 2015
  • Post category:Dystonia/Rare Disease

An incurable disease that causes painful muscle spasms just got $45,000 closer to a cure. Dystonia is an uncomfortable condition that causes muscles to contract involuntarily, forcing the body to…

Continue Reading Guess What This Guy is Doing for Dystonia with 45,000 Bucks?
Medical Marijuana to the Rescue for Dystonia Treatment

Medical Marijuana to the Rescue for Dystonia Treatment

  • Post author:Alisha Stone
  • Post published:October 30, 2015
  • Post category:Dystonia/Rare Disease

Eric Mevis, suffers from dystonia, in his case oral mandibular dystonia, a rare disease that causes facial muscles, such as those in his lips and tongue, to twist and contract uncontrollably.…

Continue Reading Medical Marijuana to the Rescue for Dystonia Treatment
Balloons Do More Than Just Fly, They Raise Awareness

Balloons Do More Than Just Fly, They Raise Awareness

  • Post author:Kiki Jones
  • Post published:October 28, 2015
  • Post category:Dystonia/Rare Disease

The Proclaimers said they would walk 500 miles for the one they love. This balloon does one better. In a blaze of purple, 600 balloons were released in the UK…

Continue Reading Balloons Do More Than Just Fly, They Raise Awareness
Esto es lo que ocurre cuando los pasajeros de una aerolínea huelen un pañal sucio

Esto es lo que ocurre cuando los pasajeros de una aerolínea huelen un pañal sucio

  • Post author:PW Blogger
  • Post published:October 28, 2015
  • Post category:Dystonia/Rare Disease

Nos ha ocurrido a todos. Es un viernes por la tarde. Estas en el aeropuerto, ansiosamente esperando cerca de la puerta de abordo para el próximo vuelo. Han pasado demasiados…

Continue Reading Esto es lo que ocurre cuando los pasajeros de una aerolínea huelen un pañal sucio
Which Hilarious Character is Your Rare Disease

Which Hilarious Character is Your Rare Disease

  • Post author:Kiki Jones
  • Post published:October 23, 2015
  • Post category:Ankylosing Spondylitis/Behçet's/CAPS/CVID/Dystonia/Familial Hypercholesterolemia/HAE/Rare Disease

Having a rare disease sucks, but sometimes it helps to cut your disease down to size mentally--especially if you can't do it physically! And, hey, laughing is better than crying,…

Continue Reading Which Hilarious Character is Your Rare Disease

A Wheelchair Bound Girl Just Wanted to Dance, This Organization Made it Happen

  • Post author:Rebekah
  • Post published:October 20, 2015
  • Post category:Dystonia/Rare Disease

Imagine having a disorder that controls your movements. A disorder that causes painful muscle contractions that can’t be stopped. Imagine being in a wheelchair because of this....and wanting to dance.…

Continue Reading A Wheelchair Bound Girl Just Wanted to Dance, This Organization Made it Happen

This Is What Moving To College with a Chronic Illness Looks Like

  • Post author:Patient Worthy Contributor
  • Post published:October 19, 2015
  • Post category:Dystonia/Rare Disease

Going off to college is a big change for anyone. You’re likely living in a new city, dwelling in a new room, and surrounded by hundreds, if not thousands, of…

Continue Reading This Is What Moving To College with a Chronic Illness Looks Like
Cervical Dystonia is All in Your Head—Now Here’s How to Fix it
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Cervical Dystonia is All in Your Head—Now Here’s How to Fix it

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

There’s a famous line from Harry Potter and the Deathly Hallows, when (*SPOILER ALERT*) Harry talks with Ghost Dumbledore for the last time. Trapped in a disturbing posthumous landscape, about to…

Continue Reading Cervical Dystonia is All in Your Head—Now Here’s How to Fix it
How To Be A True Hero Despite Living With Rare a Disease
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How To Be A True Hero Despite Living With Rare a Disease

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

We all know what it’s like to have a bad day, a bad week, or even a bad year. But the thing is, with time, things usually work out; life…

Continue Reading How To Be A True Hero Despite Living With Rare a Disease

Finding Solutions in the Most Unlikely Places, Here’s What You Do

  • Post author:Rebekah
  • Post published:October 7, 2015
  • Post category:Dystonia/Rare Disease

What do you do when you can't get the care you need? If it's an insurance issue holding you up, then you'll probably end up spending countless hours on the…

Continue Reading Finding Solutions in the Most Unlikely Places, Here’s What You Do

How a Walk in the Zoo Helped Two Little Girls with Dystonia

  • Post author:Patient Worthy Contributor
  • Post published:October 6, 2015
  • Post category:Dystonia/Rare Disease

For parents of children with dystonia, that frustration is a horrible, ongoing reality. Parents like Melissa Phelps from Gallaten, Kentucky knows this all too well—her young daughters Madison and Olivia…

Continue Reading How a Walk in the Zoo Helped Two Little Girls with Dystonia

How One New Jersey Town is Bringing in the Big Guns to Beat Dystonia

  • Post author:Patient Worthy Contributor
  • Post published:October 5, 2015
  • Post category:Dystonia/Rare Disease

Right now, you and I are smack dab in the middle of one of history’s greatest information ages. We have more ways to learn about the world around us than…

Continue Reading How One New Jersey Town is Bringing in the Big Guns to Beat Dystonia
Editor’s Choice Weekend Roundup: 9-25-15

Editor’s Choice Weekend Roundup: 9-25-15

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

Check out and pass along the Editor's Choice articles of the week! [one_half] [/one_half] [one_half_last] Learn why this Viral Message is so Important After a waitress took her speech and…

Continue Reading Editor’s Choice Weekend Roundup: 9-25-15
This Mom’s Heart Will Make You Want to Act
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This Mom’s Heart Will Make You Want to Act

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

It's September! You know what that means? Happy "Dystonia Awareness Month!" Maybe "Happy" is the wrong word... Because, while spreading awareness is always something to cheer about, dystonia is not. Here…

Continue Reading This Mom’s Heart Will Make You Want to Act

Here’s Why People With Dystonia Are Basically Twilight Vampires

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

We know that overexposure to the sun cause a serious burn-peel situation, but did you know that the sun can be especially risky for those with a predisposition to developing…

Continue Reading Here’s Why People With Dystonia Are Basically Twilight Vampires

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
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Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
*cancer that cannot be removed with surgery or has spread to other parts of the body. GEJ= gastroesophageal junction (where the esophagus joins the stomach)
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