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Exploring the ‘Huntington's Family’

Inspiration comes from a variety of sources.

For Kendra Bechtel, the television show House provided a topic for her Division III studies. The “medical mystery” drama featured Huntington’s disease prominently in a few episodes; this, combined with diagnosis of the disease in Bechtel’s extended family, piqued her interest.

Huntington’s disease is a neurodegenerative disorder affecting one in 10,000 Americans. The symptoms are similar to Parkinson’s disease (involuntary movements, lack of coordination) and Alzheimer’s (long and short-term memory loss, eventual dementia). Huntington’s disease is a terminal condition, with the ill person progressively losing functionality over a period of years.

As part of her Div III, Bechtel interviewed two women whose husbands are diagnosed with Huntington's disease. Bechtel then created a report analyzing these interviews and distilling the emotional and financial burdens Huntington's disease reaped on these two families.

A person who may develop Huntington’s can be tested genetically for the disease before symptoms appear. A child of an affected parent has a 50 percent chance of carrying the gene that causes Huntington’s.

Bechtel also interviewed two men whose parents are diagnosed. One of the men found out he has the Huntington’s gene. The other chose not to be tested. The ramifications of both situations loom large in the men’s lives, with one assured of eventual illness, the other unsure. 

“The project wasn’t about coming up with solutions. It was about highlighting the stories and voices of people who aren’t usually featured in disease narratives,” says Bechtel.

Genetic counselors are one such under-featured party. In instances where genetics determine the presence of a disease, these counselors serve an important role in easing the patients through the testing process.

“They provide counseling, and they explain the science to people who are going to undergo testing,” Bechtel says. “The genetic counselor has a far more personal relationship with all members of the ‘Huntington’s family’ than any other health care professional.”

Hampshire’s Divisional system has provided Bechtel with a determination to succeed. “Mistakes aren’t necessarily a problem—mistakes can be so much more useful than being content with whatever path you’re on,” she says. “(The Divisional system) teaches you to deal with the consequences of your choices. We develop a kind of intellectual stamina that’s hard to learn in a traditional college.”

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