A recent study has brought attention to the complex challenges faced by children with hidradenitis suppurativa (HS), a chronic and often painful skin condition. According to new research summarized by…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Life is ever evolving so it is important to remember that the storms in our lives do not always last forever. When I developed dystonia in 2001, I lost everything I was…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
If you have read my books, seen my blogs, or watched my videos, you know that I live with a neurological movement disorder called dystonia, which I've had since 2001.…
Having lived with chronic pain from dystonia for over 20 years, I spent most of that time focused on treating the physical symptoms. This has been very important and helpful,…
In a word, nothing. In two words, don’t panic. In two other words that are the same but are more positive and action oriented…be calm. Let me explain…when we experience…
The other day I read a post in a dystonia support group that is similar to something I see and hear very often. I’m sure you have as well, and…
We have all at one time or another experienced pain and suffering of some kind. I sure have, living with dystonia for over 20 years, the first 5 of those years being…
Having lived with chronic pain and involuntary muscle contractions from a neurological movement disorder called dystonia since 2001, I felt defeated many times. But I am still here battling every day… and…
I love quotes. Some of them I read or hear and they go in one ear and out the other. Those that really resonate stick with me and help change…
This may sound like a strange title so let me explain. I live with a health condition called dystonia, which is a neurological movement disorder. It is the third most…
In 2001, dystonia totally changed my life. I put together a video that shares my 20+ year pictorial journey with dystonia, chronic pain, and overcoming anxiety, depression, and morbid obesity…
For most of my 21 years with chronic pain and other symptoms from dystonia, a neurological movement disorder, I viewed it as a curse; an evil intruder that ruined my life.…
How do certain conditions contribute to mental health, depression, and anxiety? It's no secret that having a rare, chronic, or underserved condition can be isolating. But what are the actual…
Having lived for over 20 years with chronic pain and persistent involuntary muscle contractions from dystonia, a neurological movement disorder, I have experienced a lot of suffering. If you have read…
Having lived over 20 years with chronic pain from dystonia (a neurological movement disorder) in order to best manage my condition, I have to be very mindful of the way I live…
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…
Did you know that there are six muscles attached to each eye which influence the way the eye moves? When these muscles are properly working, the eyes move together and…
This is an interview I did with Dr. Carly Hudson on the Healing Ground Movement podcast discussing my life with dystonia and chronic pain, as well as the various ways…
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…
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…
According to a recent article, mental health affects the physical body in a number of ways, and it’s important to recognize and understand this connection. Mental health has such a…
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…
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.
