dystonia – Page 6 – Patient Worthy

2017 ST Dystonia Annual Symposium

Post author:Patient Worthy Contributor
Post published:September 26, 2017
Post category:

source: pixabay.com

Navigating Dystonia and Depression

Post author:Patient Worthy Contributor
Post published:September 25, 2017
Post category:Dystonia Rare Disease

I like nonsense, it wakes up the brain cells. Fantasy is a necessary ingredient in living, It’s a way of looking at life through the wrong end of a telescope.…

Source: Pixabay

It’s Not Too Late to Register for This Dystonia Event in Rhode Island!

Post author:Patient Worthy Contributor
Post published:September 4, 2017
Post category:Dystonia Rare Disease

Spasmodic Torticollis/Dystonia or ST/Dystonia, is a non-profit organization whose aim is to support patients suffering from ST, also referred to as cervical dystonia. Dystonia involves involuntary muscle contractions that may…

[Source: pixabay.com]

How One Musician’s Battle against Dystonia Turned into a Lifelong Pursuit

Post author:Alexa Lee
Post published:September 1, 2017
Post category:Dystonia Rare Disease

Before I tell a story (that I first read in The Globe and Mail newspaper) about Joaquin Farias and his years-long quest to unlock the mysteries of dystonia, I must…

Source: www.pixabay.com

Scientists Find a New Genetic Cause for Dystonia… and a Possible Treatment

Post author:Ronald Ledsen
Post published:September 1, 2017
Post category:Dystonia Rare Disease

A team of researchers at the University College of London (UCL) looking at the genome of childhood-onset dystonia patients has stumbled on a startling discovery: 28 of the patients had…

[Source: pixabay.com]

For One Dancer, Ballet Takes Center Stage in the Face of Dystonia

Post author:Chloe Easterbrook
Post published:August 15, 2017
Post category:Dystonia Rare Disease

When I was in my 20s and 30s, I performed in a lot of musical theater performances— “Music Man,” “Big River,” “Carousel,” “You’re a Good Man, Charlie Brown.” I was…

Editor’s Choice: Powerful Purple Crayons and Supermoms

Post author:Patient Worthy Contributor
Post published:June 9, 2017
Post category:Cystinosis Dystonia Pemphigus and pemphigoid Rare Disease Sickle cell anemia

Welcome to Friday Patient Worthians! This week we have stories on cystinosis and super moms with sickle cell! Additionally, we have a patient story on dystonia and an upcoming event. Lastly, an…

https://pixabay.com/en/adventure-hike-hiking-landscape-1868255/

Researchers Are On the Trail to Find the Cause of Dystonia

Post author:Al Pendleton
Post published:June 2, 2017
Post category:Dystonia Rare Disease

Who would have thought that a classic novel came about because a student accidentally skipped a page in his test booklet for a final exam essay? The person charged with…

Dystonia Medical Research Foundation’s NYC Dystonia Patient Symposium

Post author:Patient Worthy Contributor
Post published:May 7, 2017
Post category:

https://pixabay.com/en/concert-violin-violinist-music-1838412/

Get Ready… The NYC Dystonia Patient Symposium is Coming Up Next Week!

Post author:Erica Zahn
Post published:May 3, 2017
Post category:Dystonia Rare Disease Timely

A few years ago, a friend of mine who is a violinist suddenly developed a movement disorder called focal dystonia. His neck began to have intermittent muscle contractions. His head would…

Editor’s Choice: Overcoming Obstacles and Fulfilling Dreams with Rare Disease

Post author:Patient Worthy Contributor
Post published:April 21, 2017
Post category:Duchenne Muscular Dystrophy Dysautonomia Dystonia Gastroschisis POTS Rare Disease Trigeminal Neuralgia (Tic Douloureux)

Happy Friday Patient Worthians! PW Contributor Tom Seaman talks about what it's like to overcome the mental toll of your rare disease diagnosis. Another PW Contributor suffering from TN, dysautonomia and…

Overcoming Victim Mentality When Living with Chronic Illness

Post author:Tom Seaman
Post published:April 13, 2017
Post category:Dystonia Rare Disease

When the pain and muscles contractions from my dystonia were at their worst for me (see above), it significantly limited what I could do. For years I characterized dystonia and…

Editor’s Choice: New MS Drug Approved, Narcolepsy Realities and Building a CF Team

Post author:Patient Worthy Contributor
Post published:March 31, 2017
Post category:Cystic Fibrosis Dystonia Multiple Sclerosis Narcolepsy Rare Disease

Welcome back Patient Worthians! This week we have some exciting news for the MS community. Additionally, we have some great tips on how to build your CF dream team. Also,…

https://pixabay.com/en/pencils-crayons-colourful-rainbow-452238/

Artist Turns His Experience with Facial Dystonia Into Stunning Works of Art

Post author:Alexa Lee
Post published:March 29, 2017
Post category:Dystonia Rare Disease

The artist's medium? Wood, mirrors, and various other materials. His art? Jarring and beautiful headpieces—Tiago Valente's way of understanding his own experience with dystonia. Tiago called it facial dystonia, and from…

Source: www.pixabay.com

Ode to Brain Surgery: This Musician Plays His Guitar on the Operating Table

Post author:Alexa Lee
Post published:February 21, 2017
Post category:Dystonia

The Chinese musician cradled a guitar, the callused fingers of his left hand flying across frets, and the fingers of his right hand plucking and strumming. But on this Tuesday…

Source: www.pixabay.com

If This Man Can Write a Book About Dystonia, So Can You!

Post author:Alexa Lee
Post published:February 20, 2017
Post category:Dystonia Rare Disease

I’m a firm believer in the fact that everyone has a story. Sure, the sentiment is a little corny. But that doesn’t make it any less true. That’s why I…

Editor’s Choice: Love and Other Drugs

Post author:Patient Worthy Contributor
Post published:February 17, 2017
Post category:Cystic Fibrosis Duchenne Muscular Dystrophy Dystonia Rare Disease Spinal Muscular Atrophy

Welcome back to Editor's Choice Patient Worthians! This week, a PW Contributor told a love story about how her husband's bipolar disorder helps her manage her rare disease. We also have an…

Este hombre cree en una curación para la distonía. ¿Y Vos?

Post author:Jean Martell
Post published:February 16, 2017
Post category:Dystonia Español Rare Disease

El ha sido presentado en el National Geographic Channel. Le ha dado la mano al presidente Obama. Ha sido detenido por el servicio secreto. Incluso después de todo eso, Jason Dunn sigue…

My Saving Grace: How My Bipolar Husband Was the Best Thing for My Cervical Dystonia

Post author:Patient Worthy Contributor
Post published:February 14, 2017
Post category:Dystonia

I love my husband. He is my best friend. When we stood before God and our family to exchange vows, we made a commitment for better or for worse. Wow,…

Editor’s Choice: Dreaming of the Golden Years on Super Bowl Sunday

Post author:Patient Worthy Contributor
Post published:February 10, 2017
Post category:Cystic Fibrosis HAE Lennox-Gastaut syndrome Myasthenia Gravis Rare Disease

Got the post-Superbowl blues? Then check out these uplifting rare disease stories! One amazing young woman with cystic fibrosis got a sweet shout-out on Super Bowl Sunday, and another older…

Source: pixabay.com

Katie Finally Has a Ray of Hope Against Dystonia

Post author:Al Pendleton
Post published:February 10, 2017
Post category:Dystonia Rare Disease

Courage takes many forms. Most people think of it as a way of facing down enemies or standing on principle. However, a seven-year-old Irish girl named Katie shows her own…

Fred and me. Fred helped diagnose me with dystonia many years ago before anyone else knew what it was and I was still doctor shopping. He has dystonia also.

Self-Empowerment Tips for Healthy Living

Post author:Tom Seaman
Post published:February 2, 2017
Post category:Dystonia Rare Disease

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…

This little girl with dystonia needs your help!

Esta niña con distonía necesita tu ayuda en este momento

Post author:Patient Worthy Contributor
Post published:February 1, 2017
Post category:Dystonia Rare Disease

¿Cuánto cree usted que la media niña de cinco años de edad, pesa? De acuerdo con kidshealth.org, la respuesta es aproximadamente 45 libras. Ahora, ¿cuánto cree usted que una silla…

Pixabay

El destino de este hombre atrevido: distonía y Tenis

Post author:Patient Worthy Contributor
Post published:January 24, 2017
Post category:Dystonia Rare Disease

¿Quién sabía que la distonía y tenis van mano a mano ?! Por veinte años de edad, Josh, es un partido en el cielo. Él ha estado fascinado con tenis…

TheDigitalArtist / Pixabay

Cómo estimular su cerebro para tratar la distonía

Post author:Patient Worthy Contributor
Post published:January 22, 2017
Post category:Dystonia Rare Disease

El hecho de que Halloween ha pasado no significa hemos terminado de hablar de la cirugía cerebral. Specifically, deep brain stimulation therapy. No, esto no es algo así como el…

2017 ST Dystonia Annual Symposium

Navigating Dystonia and Depression

It’s Not Too Late to Register for This Dystonia Event in Rhode Island!

How One Musician’s Battle against Dystonia Turned into a Lifelong Pursuit

Scientists Find a New Genetic Cause for Dystonia… and a Possible Treatment

For One Dancer, Ballet Takes Center Stage in the Face of Dystonia

Editor’s Choice: Powerful Purple Crayons and Supermoms

Researchers Are On the Trail to Find the Cause of Dystonia

Dystonia Medical Research Foundation’s NYC Dystonia Patient Symposium

Get Ready… The NYC Dystonia Patient Symposium is Coming Up Next Week!

Editor’s Choice: Overcoming Obstacles and Fulfilling Dreams with Rare Disease

Overcoming Victim Mentality When Living with Chronic Illness

Editor’s Choice: New MS Drug Approved, Narcolepsy Realities and Building a CF Team

Artist Turns His Experience with Facial Dystonia Into Stunning Works of Art

Ode to Brain Surgery: This Musician Plays His Guitar on the Operating Table

If This Man Can Write a Book About Dystonia, So Can You!

Editor’s Choice: Love and Other Drugs

Este hombre cree en una curación para la distonía. ¿Y Vos?

My Saving Grace: How My Bipolar Husband Was the Best Thing for My Cervical Dystonia

Editor’s Choice: Dreaming of the Golden Years on Super Bowl Sunday

Katie Finally Has a Ray of Hope Against Dystonia

Self-Empowerment Tips for Healthy Living

Esta niña con distonía necesita tu ayuda en este momento

El destino de este hombre atrevido: distonía y Tenis

Cómo estimular su cerebro para tratar la distonía

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