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

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 involuntarily twist, and then his right arm began to go numb. He was in constant pain which affected all areas of his life. Ultimately, it caused him to change careers.

A movement disorder neurologist explained to him the onset of this condition was caused by repetitive motion—his chin on the violin, the sawing motion of the bow across the strings. These motions were repeated over decades, so while the onset of his dystonia was sudden, it had been years in the making.

My friend had to step down from his seat in the orchestra, and go through several years of treatment. It’s important to note that treatment is not a one-size-fits-all deal. It has to be carefully tailored to the individual, and the most successful treatments address the whole person.

There are a number of different forms of the disorder. However, they all share commonalities, including repetitive, patterned, twisting, involuntary muscle contractions.

Depending upon the severity, dystonia can be life-altering. This is why finding support is so important. To locate an online support group, click here. The Dystonia Foundation provides resources and information, and it’s a great place to start if you’ve been newly diagnosed.

And, on May 7, 2017, the NYC Dystonia Patient Symposium: Living With Dystonia will take place. Here is the information (courtesy of the Dystonia Medical Research Foundation):

  • Date and Time: May 7, 2017
    Registration: 8:15 am – 9:00 am
    Program: 9:00 am – 4:30 pm
  • Location: Mount Sinai Beth Israel Friedman Conference Center
    10 Union Square East, 2nd Floor (between 14th & 15th Streets)
    New York, NY
  • Topics: Research updates, current treatments, physical therapy, occupational therapy, alternative therapies, yoga, and more

To register in advance, click here.

Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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