Medical Condition: Dystonia
Medical Therapy: Neurostimulation for Movement Disorders
Humanitarian Device: Medtronic DBS Therapy has been authorized by United States Federal Law for the use as an aid in the management of chronic, intractable (drug refractory) primary dystonia. The effectiveness of this device for this use has not been demonstrated.
In 2012, Haruko-san underwent surgery to receive deep brain stimulation therapy to treat cervical dystonia, a painful condition in which the neck muscles contract involuntarily, causing the head to twist or turn to one side. She now works tirelessly to bring more attention to dystonia, in order to help others in Japan.
"At the age of 19, I started suffering from symptoms of cervical dystonia, a condition that caused my neck to twist and turn to one side. In the spring of 2012, the symptoms worsened. My body started to bend. I had difficulty controlling my neck, heads and trunk. And I was in constant pain.
"It was then I made up my mind to undergo surgery for deep brain stimulation. After the surgery, my symptoms lessened, with pain and tremors decreasing. I could walk easily and for longer periods of time. The surgery enabled me to expand my activities supporting those who have disabilities and difficulties.
"I am the founder and former vice president of the Dystonian Friends Association. I worked at the Association for nine years, meeting many of those who suffered from the various types of dystonia, learning about their individual difficulties.
"My turning point is when I participated as one of other patients in the documentary film, “Dystonia.” The film includes scenes of my surgery and interviews with my medical team and other patients with various types of dystonia. I still support this effort by travelling around Japan to give speeches.
"I have two primary purposes. One is to create awareness of dystonia for people who don’t know about the disease. Another is to share the process of my surgery with patients who are thinking about that procedure.
"Now and the future, I continue activities to expand dystonia awareness and encourage the people who confront the disease and its difficulties, trying to share appropriate information and providing support to them so that they can get back the life by the applicable treatment and social acceptance."
"Bloom where God has planted you."
"I think that each person has their own mission of life. "Bloom where God has planted you" simply reminds me of my mission of supporting people who need some care and courage to fight with their disease and difficulties.
"I also understand that you should prepare fully, and do not regret your efforts afterwards if you try to do the best. I try to tackle the issues in front of me one by one, by concentrating on things sincerely and efficiently. Once I could prepare as much as possible, then I do it without hesitation."
Meguminosono: Megumi-no-sono means "Garden of Grace" in Japanese. Since 1968, it has provided homes, vocational support and welfare service for the elderly and people with physical, intellectual and mental disabilities.
*Not everyone who receives this therapy will receive the same results as the patient in this story. Talk with your doctor to determine if this type of therapy is right for you.