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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
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
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 1st 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.
“He encouraged me to take back control of my body,” recalls Elisse.
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Hoping to find some support and answers, Elisse’s family attended the Dystonia Medical Research Foundation’s 1st 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
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