[Congressional Record Volume 142, Number 135 (Thursday, September 26, 1996)]
[Extensions of Remarks]
[Page E1706]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




       NATIONAL DYSTONIA AWARENESS WEEK SEPTEMBER 28 TO OCTOBER 5

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                             HON. RON LEWIS

                              of kentucky

                    in the house of representatives

                     Wednesday, September 25, 1996

  Mr. LEWIS of Kentucky. Mr. Speaker, I rise to inform my colleagues 
about National Dystonia Awareness Week, September 28 to October 5, 
1996.
  I was privileged, Mr. Speaker, to attend a chili supper in June given 
by a group of residents of the Second District who deal with dystonia 
everyday. These residents regularly meet and discuss the challenges 
they meet everyday.
  Dystonia is a relatively rare neurological disorder characterized by 
severe muscle contractions and sustained postures that afflicts an 
estimated 300,000 people in North America. Dystonia is a complex 
disorder that consist of three types and is often times misunderstood 
and misdiagnosed.
  The three types of dystonia are primary, focal dystonias, and 
secondary dystonia.
  Primary dystonia or idiopathic torsion dystonia [ITD], causes spasms 
that affect many different parts of the body and often starts in 
childhood.
  Focal dystonias affects one specific part of the body and is 
distinguished for five varieties. Blespharasposm causes eyelids to clse 
tightly for seconds to hours. Cervical dystonia is the contraction on 
neck muscles turning the head to one side or pulling it forward or 
backward. Oromandibular dystonia--Meige's Syndrome--is a combination of 
blepharospasm and oromandibular dystonia in which the muscles of the 
lower face pull or contract irregularly to cause facial distortions. 
Spasmodic dysphonia affects the speech muscles of the throat, causing 
strained, forced, or breathy speech. Writer's cramp is characterized by 
muscles in the hand and forearm contracting.
  The last type of dystonia, secondary dystonia, is caused by an injury 
or other brain illness.
  Unfortunately, there is no known cause or cure for dystonia.
  Researchers, however, have made promising advancements in 
understanding this disorder. In 1989, Drs. Xandra Breakefield and James 
Gusella made the discovery of a genetic marker that will significantly 
advance future research. In addition, hundreds of dystonia patients and 
their families have made the commitment to donate their brains to 
further dystonia research.
  Mr. Speaker, I would like to thank you for allowing me this 
opportunity to familiarize my colleagues with dystonia and encourage 
each of my colleagues to learn more about this neurological disorder.
  More information about dystonia can be found on the world wide web. 
The Dystonia Medical Research Foundation's home page not only offers 
information about dystonia, but also details meeting places and dates 
for those who are or have a family member affected by dystonia and can 
be reached at hhtp://www.iii.net/biz/dystonia/. You can also learn more 
by visiting an internet newsgroup dedicated to dystonia at 
``alt.support.dystonia.''

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