[Congressional Record (Bound Edition), Volume 156 (2010), Part 8]
[House]
[Pages 11240-11241]
[From the U.S. Government Publishing Office, www.gpo.gov]




           SALUTING DYSTONIA SUFFERER MILAGROS (MILLIE) MUNOZ

  The SPEAKER pro tempore. Under a previous order of the House, the 
gentlewoman from Florida (Ms. Ros-Lehtinen) is recognized for 5 
minutes.
  Ms. ROS-LEHTINEN. Mr. Speaker, tonight I rise in solidarity with a 
wonderful and determined South Florida woman, Millie Munoz. Millie has 
dystonia, a little-known movement disorder that causes a person's 
muscles to contract and spasm involuntarily. The trademark of this 
disorder is repetitive, patterned and uncontrollable movements. It 
resembles opposing muscles competing for control of a body part. There 
are over a dozen forms of dystonia, and it is a symptom of many major 
diseases and conditions. Dystonia affects men, women and children of 
all backgrounds, all ages, and does not discriminate. And there is no 
cure.
  Millie was born in Miami and had exhibited symptoms of dystonia since 
childhood. Each symptom was treated separately. She wore a brace on her 
right leg to help with walking and attended speech therapy classes 
throughout her school years. Other symptoms were neglected entirely, 
and Millie was told to do the best she could with the pain. She went 
from doctor to doctor, and was often told that it was all in her head. 
About 6 years ago, she started exhibiting other symptoms, only to be 
given one misdiagnosis after another. Millie had pain in her neck, her 
shoulders, her wrists, her hips, and she fell constantly.
  Finally in the summer of 2006, she was diagnosed with generalized 
dystonia, a condition where all of the muscles of her body are 
impacted. Shortly thereafter, Millie's life as she knew it came to an 
end. In a short period of time she went from climbing the Great Pyramid 
in Egypt to being in a wheelchair and bed bound. She was constantly in 
excruciating pain with chronic fatigue and involuntary movements of her 
arms, hands, neck, mouth, face and eyes.
  Luckily, in 2008, she had deep brain stimulation surgery, which 
provided some relief. But she had yet another battle to fight. Her 
ability to swallow and eat were impacted to the point that she was on 
her deathbed, people thought.
  Well, through her personal strength, through her resolve, Millie 
pulled through and she survived. Today, Millie has a feeding tube and 
braces on her legs, but she is as resilient and as determined as ever. 
She came to see me here in D.C. in my congressional office, lobbying 
all of the Members of Congress to be more knowledgeable about her 
disease dystonia.
  Dystonia is a silent, brutal disease. The constant tug of war of 
muscles forces people to live in constant, severe pain and exhausted. 
But not Millie. Much of the time the body's struggles are all internal, 
hiding from an outside observer that the struggle with dystonia 
encompasses each and every moment. Those with dystonia often say that 
the disorder ``robs you of the freedom to move.'' It is as terrible as 
it is debilitating, yet the vast majority of people with dystonia have 
no negative impact to their intelligence or perceptions. These 
individuals live their lives imprisoned by the uncontrollable actions 
of their body in conflict with the will of their minds.
  Dystonia is unknown to most Americans, or at best misunderstood. 
Without proper awareness and diagnosis, the limited therapies that can 
help people like Millie will never be applied. Together, we must raise 
awareness of this disorder and support the research that can help find 
a cure to this silent internal storm.
  Millie, I praise you. I congratulate you for your will and 
determination in

[[Page 11241]]

the face of this terrible disorder. The challenges that dystonia has 
presented to you are exceeded by the promise and the hope that your 
survival has demonstrated. May your resolve, Millie, be a beacon to the 
hundreds of thousands of Americans who suffer from dystonia.
  I welcomed you to the U.S. Capitol and I hope that you come back very 
soon, Millie. You are going to find a cure because you are determined 
to do so.
  Congratulations, Millie, and carry on.

                          ____________________