I’ll mention this very informative – and sad – New York Times story in class tomorrow. It involves a young woman named Katharine Moser who decided to undergo genetic testing to see if she carried the gene for Huntington disease.
Katharine recalls how her family considered the disease to be a curse – a shameful thing not to be mentioned. Strangers showed a remarkable lack of compassion, assuming that her grandfather’s unsteady gait (an early symptom of the disease) meant he was drunk. Her mother was appalled at Katharine’s interest in being tested for the disease; if Katharine carried the gene, that meant her mother did too – and her mother did not want to know.
Here is a video talking about how people who have a family history of Huntington disease are more open about the disease now than their parents or grandparents were. There seems to be a lessening of the shame and stigma that has typically been associated with Huntington disease. Good! How ridiculous it is to view a genetic disease as shameful.
There are several short scenes in this video showing patients with Huntington disease, and if you watch carefully, you will notice some of the involuntary movements typical of Huntington disease. These short, unpredictable movements may be jerky or more writhing in nature. They are called “choreiform” movements (from the Greek “chorea” or dance).