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editor's choice

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...

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

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...

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...

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

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...

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

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

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...

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

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...

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

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...

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...

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

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...

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...

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...

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

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