If you have chronic pain like I do (mine is caused by a movement disorder called dystonia), or one of many other thousands of health conditions, or just dealing with…
Life is filled with endless ups and downs. The first 5 of my ongoing 20 years living with dystonia were pretty much nothing but down times. I experienced the most horrible pain…
What does it mean to you to be living with a rare disease or chronic illness at this time of year? Over the years, since I was diagnosed I've never…
Human beings are wired to run away from things that are painful and difficult. I sure as heck did the first 5 years of my dystonia diagnosis. It often seems that…
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…
Most of us have heard of the fight-or-flight stress response. It becomes activated when we believe there is a chance we can outfight or outrun real or perceived danger and…
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 can happen with any health condition…
Have you ever had a panic attack? If so, you know how terrifying they can be. I have had plenty and know exactly what they are like…torture! There is good…
Believe it or not, it wasn’t until final exams my freshman year in college that I heard the term “stressed out.” It just wasn’t used that often back then. Nor…
I think everybody would agree that stress is a challenge in their lives. Personally, I think we should take on the belief that no stress exists and that it is…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
How many of you find yourself rushing around and it’s causing you stress and pain? And if you already have pain, does it add to your pain? Are you trying…
When I think of anxiety, I think of the movie, Gremlins (1984). For those of you who have seen this movie, you know that feeding a gremlin after midnight turns…
I think it would be safe to say that everyone is afraid of something. Sometimes the fear is justified and sometimes not. In this article, I want to focus on…
In 2015, I published my first book, Diagnosis Dystonia: Navigating the Journey. It is a combination autobiography, self-help, education book that provides treatment options, coping strategies, skills for daily living,…
By Tom Seaman If you are like me and probably most people, in today’s busy world it is a big challenge to be still and mentally at ease. This is…
What does it mean to you to be living with a rare disease or chronic illness at this time of year? Over the years, since I was diagnosed I've never…
According to Neurology Today, researchers have discovered a new way to use artificial intelligence (AI) to enhance medical knowledge. Through the DystoniaNet platform, which uses deep learning AI, researchers targeted…
As sourced from The Joplin Globe and the Lori Marble Blog, there are a lot of myths surrounding lefties. The minority among us, historically accused of witchcraft and dark magic,…
by Lauren Taylor from In The Cloud Copy Cervical dystonia, sometimes called spasmodic torticollis, is a condition in which the affected individual’s neck muscles involuntarily contract which causes the head…
Happy Friday! September is a packed with rare disease awareness, as we've been featuring all month long. We wanted to make sure to draw attention to Dystonia Awareness Month, which…
by Lauren Taylor from In The Cloud Copy After completing an internship at the world-renowned Cleveland Clinic, one Ohio teenager is now working on changing the world for dementia patients…
It goes without saying that change is not easy for most people. If life has been a certain way for many years and something alters the course of things, it…
Do you want to make a difference in patient advocacy and rare disease education? Well, here's your chance. Every year, the Dystonia Medical Research Foundation (DMRF) holds a local…
For a lot of us, self-care is difficult. This is for a lot of reasons, some of which might be guilt, not enough time, putting others before ourselves, not sure…
© Copyright 2024 Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
