[Congressional Record Volume 164, Number 161 (Friday, September 28, 2018)]
[Extensions of Remarks]
[Pages E1331-E1332]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




           RECOGNIZING SEPTEMBER AS DYSTONIA AWARENESS MONTH

                                 ______
                                 

                       HON. CHRISTOPHER H. SMITH

                             of new jersey

                    in the house of representatives

                       Friday, September 28, 2018

  Mr. SMITH of New Jersey. Mr. Speaker, I rise today to join those who 
have participated in public activities and forums this month to mark 
September as Dystonia Awareness Month. Public awareness events and 
campaigns help raise funds for improved research and treatment to one 
day find a cure.
   Dystonia is a neurological movement disorder that causes muscles to 
contract and spasm involuntarily. It affects men, women, and children. 
Dystonia can be generalized, affecting all major muscle groups, and 
resulting in twisting, repetitive movements and abnormal postures. It 
can also be focal, affecting a specific part of the body such as legs, 
arms, hands, neck, face, mouth, eyelids, or vocal cords.
   Dystonia is a chronic disorder producing symptoms that vary in 
degrees of frequency, intensity, disability, and pain depending on the 
type of dystonia. The inability to predict or control the movements of 
body parts vital to mobility and communication has a profound impact on 
an individual's life, and the lives of their loved ones.
   I am proud to represent the Nachbar Family of Freehold, New Jersey. 
Janice and Len Nachbar are the incredibly devoted parents of Joanna--a 
beautiful, smart woman who is afflicted with dystonia. In their role as 
leaders of the Central New Jersey Dystonia Support and Action Group, 
they are active advocates on behalf of their daughter and the dystonia 
community. The Nachbars are just one of the thousands of families 
nationwide who are part of the Dystonia Medical Research Foundation 
which raises awareness for dystonia and provides support to patients, 
families, and caregivers.
   Since I first met the Nachbars and learned of dystonia, I have 
repeatedly requested adequate appropriations for important research 
funded by the National Institutes of Health and the Department of 
Defense, and in 2015 I hosted a Congressional briefing where the 
Nachbars and other members of the dystonia community testified to the 
importance of funding and awareness for this terrible disorder.
   Despite the prevalence of dystonia, awareness and proper diagnosis 
of this disorder is extremely limited. Many patients report that it 
took visits to numerous physicians over the course of years to get a 
correct diagnosis. Currently there is no single test to confirm the 
diagnosis of dystonia. Instead, the diagnosis

[[Page E1332]]

rests in a physician's ability to observe symptoms of dystonia and 
obtain a thorough patient history.
   In order to correctly diagnose dystonia, doctors must be able to 
recognize the physical signs and be familiar with the symptoms. In 
certain instances, tests may be ordered to rule out other conditions or 
disorders. The kind of specialist who typically has the training to 
diagnose and treat dystonia is a movement disorder neurologist. 
Awareness and recognition of dystonia is crucial.
   I encourage my colleagues to learn more about dystonia, how it 
impacts the livelihood of their constituents, and honor the important 
work the Dystonia Medical Research Foundation, and families like the 
Nachbars, do to raise awareness and give hope to patients across the 
country.

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