Dystonia Medical Research Foundation

About DMRF How You Can Help Donate Promote Awareness Fundraise Join a Support Group Join the Junior Advisory Council Become a Legislative Advocate Become a Brain Donor Frequently asked questions Contact information Participate in a Clinical Trial Mission & History Board of Directors Medical & Scientific Advisory Council Musicians With Dystonia Staff For The Media Media Spokespeople About Dystonia See Dystonia Living with Dystonia: People Profiles Cure Dystonia Initiative Goal of the Cure Dystonia Initiative What Makes CDI Different? First Steps Funding 2011 Operating Plan IRS Form 990 Audited Financial Statement	Media Center People Profile: Elisse Lorenc North Barrington, Illinois resident Elisse Lorenc, 17, was 10 years old when she first noticed something was wrong. Her right foot pointed awkwardly inward and became tight and stiff. Then the same thing began happening to her right arm; it became stiff and twisted in awkward positions. Elisse was frustrated with the changes to her body, but at first she did not tell her parents, hoping it would go away. However, they gradually noticed her symptoms as well and soon took her to Rush University Medical Center. Elisse was diagnosed with general idiopathic dystonia in 2000. Elisse and her parents were no strangers to dystonia. Her older brother Kevin was diagnosed Brain surgery has allowed Elisse to move freely and run cross country. with it at age 14, but her family never knew the disorder was genetic. As the months went by, Elisse learned to cope with her disability. She continued to attend North Barrington Elementary School and then Prairie Middle School. Elisse admits going to school was “weird” at times, “I would get strange looks and questions from classmates. But I just tried to carry on with my life.” Hoping to find some support and answers, Elisse’s family attended the Dystonia Medical Research Foundation’s 1^st Children and Family Symposium in 2001. “The symposium was the best thing that has happened to my family,” says mom, Dianne. “The Foundation really provides a support system by telling these families ‘you are not awkward or strange. We are all in this together.’” Unfortunately, Elisse’s condition worsened each year. It hurt Elisse to swim; her muscles would ache. Walking became a challenge; she had difficulty climbing stairs. By 14, her right hand and arm were completely nonfunctional; she couldn’t write or hold a pencil. Doctors prescribed heavy medication to alleviate the pain to no real avail. The family, especially Elisse’s brother Kevin, researched and tried many treatment options. In 2003, Kevin underwent an invasive brain operation called deep brain stimulation (DBS). DBS involves inserting electrodes in the brain that are wired to a battery pack implanted in the chest or abdomen. Electrical pulses from the electrodes enter the brain and, for some dystonia patients, helps alleviate symptoms. Kevin had the surgery performed at Rush with Dr. Leo Verhagen and Dr. Roy Bakay. A year later, Kevin convinced his younger sister to follow in his footsteps. “He encouraged me to take back control of my body,” recalls Elisse. Click here to read more of Elisse's story... Click here for PDF of entire article Return to main Media Center page

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Make the freedom to move a reality to everyone.