As someone who was raised to have good manners, you can bet your bottom dollar that my own children do too. So I was both ashamed and proud of a…
If you have dystonia, you know the following: The quirky urge. A funny tingle. That little voice in your head. These are your gut feelings talking. But what are they…
Celia Godfrey is awesome; there's just no debate about it. I wish I had her positive attitude. The seven-year-old lives with dystonia, a neurological condition that affects communication between the…
Dystonia is a movement disorder that makes muscles contract, sometimes regularly, sometimes randomly. It can cause abnormal, often repetitive, movements, postures or both. Like others, this disease does not age…
Call me crazy, but I’m pretty sure September was trying to kill me. The whirlwind romance with summer is over. All the front displays of the supercenters showcase the brilliantly…
Have you been in search of a firm diagnosis for your health concerns? Are you wondering if "it" could be dystonia? If so, you know that it’s a difficult journey…
El tiempo se acaba! Únase a nosotros antes de septiembre termina de hacer el noveno mes del calendario del mes de la conciencia de la distonía. Si no lo ha…
Sabemos que la sobre exposición al sol provoca una situación grave quemadura o sus cortezas, pero ¿sabía usted que el sol puede ser especialmente peligroso para las personas con una…
Happy Fall Friday Patient Worthians! This week we have the amazing story about a woman with dystonia. We also have a video review of a man diagnosed with CVID. Additionally,…
When I was young, my grandfather delivered coal. And when I asked, “How much coal did you deliver today, Papa?” He always replied, “A shit ton!” That was Papa’s favorite unit of measurement.…
I want to see my kids grow up. I just want to see them a happy, that’s all. I think that goes with just about any parent; they just wanna…
I am THAT mom. I don’t like or take medicine unless it’s my last resort. And the same goes for giving it to my children. To a fault, I follow…
How does a diagnosis of dystonia change your life? Dystonia is a disorder characterized by involuntary muscle contractions that cause slow repetitive movements or abnormal postures. The movements may be…
Have you ever tried to run a marathon? If so, you’ll know how taxing and strenuous the race can be on your body. Now, consider this: What if you had…
Do you experience pain? Weakness? Swelling? Burning sensations? Dull ache over an affected area? Oddly enough, your career may be the source of your symptoms. Not to stir panic but…
Have you ever tried your hand at fundraising--especially for a rare disease like dystonia? If so, you’ll know that it’s difficult because there are so many factors involved. Without a…
Losses occur at every stage in life, particularly in the later years. As we age, we must cope with a variety of setbacks – physical, social, or emotional – that…
"Feliz Mes de la conciencia para la distonía!" Tal vez "feliz" no sea la palabra adecuada ... Porque, mientras que separa la conciencia es siempre algo que celebrar, la distonía…
People with dystonia, may have a new treatment option: brain surgery. Sure, it doesn't sound fun, but according to Dennis Russel, having the procedure for his essential tremor was "a…
How many 22 year old kids do YOU know who live WELL with a chronic illness? Uh, I can’t say I know many other than one kid who has type…
Now that I've puffed on this piece from the Hippocratic Post, I thought I'd pass it on to you. Mike Barnes, a professor of neurological rehabilitation at Newcastle University, is…
El perro de trabajo: Perros de Servicio compiten para la medalla de oro Mientras que las campañas presidenciales de 2016 se ponen en marcha, estadounidenses están tomando a las urnas…
Happy Friday Patient Worthians! We have two intriguing stories from PW contributors this week, detailing their plight with rare disease. Additionally, we have a pretty cool outcome for a pretty cool kid…
Wondering how to make your vitamins rock dystonia? (Not as badass as Chuck Norris, of course.) If yes to the vitamins, then read on! There are multiple forms of dystonia, and…
Kathleen Bissell (wonder if she's related to the vacuum people) wrote about Ernie Els's putting problems during The Masters over on www.progolfnow.com. Why do we care at PatientWorthy? Because Bissell…
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.
