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,…
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…
Medtronic’s Percept is the fourth deep brain stimulation (DBS) system that has been approved by the FDA according to a recent article in Parkinson’s News Today. The unique feature…
By Danielle Bradshaw from In The Cloud Copy Cheri Tannenbaum spends her days making 1960s flower child themed clothing and it’s a style that she’s rather fond of wearing too.…
By Jodee Redmond from In The Cloud Copy Dr. Kristina Simonyan has been studying patients with laryngeal dystonia. Through the scope of her work, she has heard numerous anecdotal accounts…
Uncertain times may be the understatement of the year so far. When the news of COVID-19 (coronavirus) caught our attention, there were a lot of people frozen in disbelief and…
I recently had the pleasure of being interviewed by Sunshine Mugrabi about how I transformed my life over the past 20 years in the face of immense pain and suffering…
In another article I wrote for Patient Worthy, I talked about the emotional pain of “victim mentality” when faced with a health or other life challenge. In this article, I…
People often tell me how upbeat and positive I am, despite living with pain from dystonia all day, every day for the last 20 years. I would say this is accurate…
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 such an important…
This interview was originally published on the AMADYS website I was recently interviewed by Matthieu Creson for AMADYS to share my experience living with dystonia for nearly 20 years, as…
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.
