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I have lived with chronic pain from a neurological movement disorder called dystonia for nearly 20 years. It reminds me of the bully who...

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Happy November! This is one of my favorite times of the year with the clean, crisp air and the leaves changing color. However, I am...

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I know many people who would love to go to a local support group, but there either isn’t one in your area or you...
editor's choice

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Happy Friday Patient Worthians! PW Contributor Tom Seaman talks about what it's like to overcome the mental toll of your rare disease diagnosis. Another PW Contributor...

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When the pain and muscles contractions from my dystonia were at their worst for me (see above), it significantly limited what I could do. For...
editor's choice

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Got the post-Superbowl blues? Then check out these uplifting rare disease stories! One amazing young woman with cystic fibrosis got a sweet shout-out on Super...

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When we are faced with a limiting health issue where performing "simple" everyday activities becomes a challenge, our self-confidence and self-worth can dwindle. This...

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Did you know that we have chemicals in the brain as powerful as drugs for pain, depression, anxiety, and other conditions? Among them are...

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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...

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Life is filled with endless opportunities. Sometimes the opportunities, or silver lining, are hard to see when we have problems with our health, finances,...

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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...
editor's choice

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Welcome to this week's Editor's Choice! When you have a rare disease like dystonia, you come across a ton of different reactions from people in...

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There is currently no cure for most chronic health conditions so treatments are focused on reducing symptoms. I live with a condition called dystonia,...
editor's choice

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Welcome to this week's Editor's Choice Patient Worthians! This week, we want to spread some info on what it feels like to actually live with...

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Dystonia is a neurological movement disorder characterized by uncontrollable, involuntary muscle spasms and contractions, causing repetitive movements, twitching, twisting, and/or abnormal postures. Muscle contractions can...
editor's choice

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Happy Friday Patient Worthians! Just because Cystic Fibrosis and Lyme Disease Awareness Month is over, doesn't mean we won't stop fighting the good fight for spreading...

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While I truly believe that people are well-intentioned, their opinions and comments often miss the mark when it comes to what we experience living...

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Living with a chronic health condition that dramatically alters one’s life can be very confusing, scary, and lonely. I lived in this mental misery for...
editor's choice

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Happy Easter Weekend Patient Worthians! And if you don't celebrate it, Passover is only a month away. If you don't celebrate either one, then why not...

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In the summer of 2001, my neck muscles began to involuntarily contract, causing my head to pull to the right. I had no idea what...

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Meet our Patient Worthy Contributors Kathryn is a mom living with undifferentiated idiopathic periodic fever syndrome, cold induced urticaria, and POTS. She takes a matter-of-fact...

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  Living with dystonia is sometimes reminiscent of the plight of Sisyphus, a king from Greek mythology. Sisyphus was king of Ephyra who was punished...

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When my dystonia was severe, my neck was turned and locked towards my right shoulder. Most people would look and not say anything. Then...

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