When UK cyclist Andrew Beale decided he was going to throw his support behind The Dystonia Society, he didn't waste time getting sponsors. With nearly $400 pledged, he was disappointed to learn that…
Have a rare disease? Have you ever been to a national patient conference? These are invaluable opportunities to connect with others who share your challenges and concerns! Imagine being in…
A mother of three in Scotland had experienced dystonia symptoms since childhood, and these symptoms got progressively worse over the years. Like so many with a rare condition it took…
Researchers at UCSF are searching for volunteers to participate in a clinical trial studying the effects of Deep Brain Stimulation on isolated/primary Dystonia. To participate you must meet the following…
When you think of 14-year-old boys, what do you think of? Rough-housing, raging hormones, an abundance of energy, maybe a little teenage rebellion? Often that’s the case, but Cooper Wilson,…
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 years when I developed dystonia,…
God blessed my husband and me with two girls, seven and nine. They are my reasons for living and my reason for fighting cervical dystonia every day. My oldest has…
Each step with dystonia can feel like a marathon. As it turns out, some people in the community mean that literally. Marathons—the 26.2 mile behemoths—have become a worldwide phenomenon. The TCS…
I read an article about several people in Norfolk who were having their benefits cut by the government, and silly me, I assumed I was reading about people located in…
Happy Passover Weekend Patient Worthians! This week Acromegaly is taking over! It's no secret that rare diseases go misdiagnosed, so in Biblical times, it's safe to say this disease when UNdiagnosed for…
At first, I howled and wanted to tear my hair out…. I was reading an article about the problems a famous golfer was having with his putting during the PGA…
Photography by Sandro Georgi Photography Nolan is an incredible person and father who is living with dystonia. He hasn't let the movement disorder hold him back from anything, even running a…
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 celebrate life?! This week we…
Nolan is a rare dad not only living with, but running with dystonia. Patient Worthy has had the privilege of meeting him, working with him in a recent photo shoot,…
In a segment on Oprah, dystonia patient Rogers Hartmann agreed to wear a camera on her head to show how she experiences the world. Bent at nearly a 90% angle, she frequently…
I have early onset cervical dystonia. CD is a neurological condition that causes the muscles in my neck and shoulders to spasm involuntarily. For some people, it gets progressively worse…
How celiac disease, vestibular neuritis, and cervical dystonia have ruined my answer to the most common way to greet people in America. “Hello, how are you?” Is it okay to say…
The Dean of Student Affairs at the National Institutes of Health (NIH), Sandra LaBlance, has one thing to say about Rachel Hunt: “She will make a difference in the world.”…
Florida resident, Brian Jackson’s, life changed dramatically when he was 15. That’s when the active high-schooler first started experiencing unusual and terrifying symptoms. First, he stopped being able to write…
Conozca a Brittany Brittany estaba desanimada después de ir a un restaurante y tener que aguantar que la camarera la ignoraba por completo cuando los sintomas de su distonía le hician difícil enunciar. Después de…
El tiempo se acaba! Únase a nosotros antes de septiembre termina de hacer el noveno mes del Mes de Concientización Distonía. Si no lo ha hecho ..... #signtheDAMpetition Blogger invitada: Pamela…
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 was wrong. My doctors were…
Aquí en PatientWorthy, creemos que la risa puede ser la mejor medicina. Humor irónico es sorta lo nuestro. Pero para aquellos que ofenden fácilmente, o tal vez incluso moderadamente intolerante,…
He’s a cop who works three additional part-time jobs to make ends meet. She’s a homemaker now, taking care of their three children, ages seven, three and a half, and…
Anyone who’s ever been in a wheelchair or knows someone who has, knows the frustration of “you can’t get there from here.” All you want to do is live your…
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