After the Diagnosis
After the diagnosis/Self harming thoughts After being diagnosed with dystonia and learning it is not a temporary problem (or if you have lived with it for years and are feeling…
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After the Diagnosis
Editor’s Choice: Thanksgiving Gratitude in the Face of Rare Disease
Happy Thanksgiving Patient Worthians! We hope you are recovering from big meals and continuing to spend time with family this weekend. Editor's choice this week focuses on gratitude expressed by our…
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Editor’s Choice: Thanksgiving Gratitude in the Face of Rare Disease
The Gift of Empathy this Thanksgiving
Recently I was asked to write a piece about what I am thankful for this Thanksgiving. My first reaction was, "Oh God, Thanksgiving is actually here again?" I don't have…
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The Gift of Empathy this Thanksgiving
Editor’s Choice: Dystonia Stories and Studies
Happy Pre-Thanksgiving Week Friends! It is almost Thanksgiving which is one of our FAVORITE holidays here at Patient Worthy. Why? Because on this holiday, we are focused on gratitude, family and…
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Editor’s Choice: Dystonia Stories and Studies
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Como ser un heroe a pesar de vivir con una enfermedad rara
Todos sabemos lo que es tener un mal día, una mala semana, o incluso un mal año. Pero la cosa es que, con el tiempo, las cosas suelen trabajar fuera;…
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Como ser un heroe a pesar de vivir con una enfermedad rara
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La distonía cervical esta en tu imaginacion – Ahora asi es como lo manejas
Hay una famosa frase de Harry Potter y las reliquias de la muerte, cuando (* SPOILER ALERT *) Harry habla con el fantasma Dumbledore por última vez. Atrapado en un…
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La distonía cervical esta en tu imaginacion – Ahora asi es como lo manejas
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Proof of Concept Study for Cervical Dystonia
Current treatments for cervical dystonia provide inadequate relief to many. Dystonia twists people and leads to strange postures, involuntary movements and pain. It affects men, women and children. Check out more…
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Proof of Concept Study for Cervical Dystonia
When Nolan Took Control of Dystonia
When that moment happened, and again I don’t know when it happened, but when that moment in my head just clicked and I stopped being, or stopped putting myself in…
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When Nolan Took Control of Dystonia
Adivina lo que este hombre está haciendo por Distonía con 45.000 dólares?
Una enfermedad incurable que causa espasmos musculares dolorosos acaba de recibir $ 45,000 más cerca de una cura. La distonía es una condición incómoda que hace que los músculos se…
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Adivina lo que este hombre está haciendo por Distonía con 45.000 dólares?
Cómo una ciudad de New Jersey está trayendo la artillería pesada para vencer Distonía
En este momento, usted y yo estamos justo en el medio de uno de los más grandes de la historia las edades de información. Tenemos más formas de aprender sobre…
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Cómo una ciudad de New Jersey está trayendo la artillería pesada para vencer Distonía
Como un paseo por el zoológico ayudó a dos niñas con distonía
Para los padres de niños con distonía, que la frustración es una realidad horrible, en curso. Los padres como Melissa Phelps de Gallaten, Kentucky lo sabe muy bien hijas-Madison y…
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Como un paseo por el zoológico ayudó a dos niñas con distonía
For Focal Dystonia, What is the “Golden Crown?”
Legend has it that Archimedes once ran through the streets of Syracuse naked yelling, “Eureka!” because he had discovered an amazing scientific principle. (BTW, if you're thinking, "What on earth…
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For Focal Dystonia, What is the “Golden Crown?”
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What Should You Know About Dystonia in Children?
The days of summer are at a close. The temperature has finally dropped, and there’s a chill in the air. A new season is upon us. Finally! School is back…
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What Should You Know About Dystonia in Children?
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Got Dystonia? The Truth Behind Pioneering Boxtox Treatment
Dealing with dystonia? Well, here’s an idea that’s tracking well with many neurologists and patients: Botox. Yeah, Botox—for dystonia! Who knew that a little old bovine injection could benefit people…
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Got Dystonia? The Truth Behind Pioneering Boxtox Treatment
Editor’s Choice: Time to Get Your Learn on about Rare Disease
Happy Halloween Weekend Patient Worthians! PW Contributor Tom has two of the most popular posts this week! In one, he gives us a surprising outlook on dystonia. Additionally, he talks about…
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Editor’s Choice: Time to Get Your Learn on about Rare Disease
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How to Take the Headache Out of Dystonia
Who doesn’t love a good story? A story that speaks to us. A story that spins a negative into a positive. When I listen to a person tell a story, I…
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How to Take the Headache Out of Dystonia
A Dystonia Q & A
September was dystonia awareness month [but that doesn't mean we can't keep promoting awareness]! Dystonia is a rare neurological movement disorder that can cause involuntary muscle spasms and contractions, tremors,…
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A Dystonia Q & A
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How to Improve the Dystonia Profile
Moving up the ranks in a disease state profile may be difficult, but not impossible. There are tried and tested ways to heighten awareness and get the dystonia message out…
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How to Improve the Dystonia Profile
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Hidden Opportunities Within Our “Problems”
Life is filled with endless opportunities. Sometimes the opportunities, or silver lining, are hard to see when we have problems with our health, finances, family, or career, but they exist.…
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Hidden Opportunities Within Our “Problems”
The Power of Positive Affirmations
Most people have probably heard the saying, “change your thoughts, change your life.” There is great truth to this because how we think can significantly impact our mental and physical…
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The Power of Positive Affirmations
How NOT to be Defined by Dystonia
Have you ever wanted to push your own limits and break out of your comfort zone? If so, you’ll know that it is difficult because getting out of your routine…
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How NOT to be Defined by Dystonia
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How to Change Your Dystonia Game with DBS
Playing games with your mind? That's exactly what experts believe you should do to stimulate your brain and stay sharp, no matter how old you are. You might be surprised…
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How to Change Your Dystonia Game with DBS
Descubre por qué este mensaje sobre la distonia es tan importante
Conozca a Brittany! Brittany estaba desanimado después de ir a un restaurante y tener la camarera ignoran por completo de ella cuando la distonía hace que le sea difícil…
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Descubre por qué este mensaje sobre la distonia es tan importante
La musa de la distonía sobre estat “molesto” por tu enfermedad
Invitado Blogger: Pamela Sloate transmite algo de su ropa sucia neurológica en su entrada en el blog original, Dis * aliviar tu inquietud. Hay un número de palabras desagradables en…
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La musa de la distonía sobre estat “molesto” por tu enfermedad
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How to Convince Legislators to Support Dystonia
Have you ever tried to convince legislators–especially your state’s Senator to support a cause–such as dystonia–that speaks to your heart? If so, you’ll know that it’s difficult because you need…
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How to Convince Legislators to Support Dystonia
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