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Confronting Huntington's disease
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Huntington’s disease is a genetic disorder in which specific nerve cells in the brain degenerate, causing symptoms like moodiness and irritability, impaired memory and executive function, and abnormal body movements.
HD affects about 30,000 people in the United States. There is no cure. People with the disease usually die within 15 to 20 years of developing movement symptoms.
This harsh reality inspired Nancy Downing, a postdoctoral fellow in clinical genetics nursing research at the University of Iowa College of Nursing, to help people with the disease function well for as long and comfortably as possible.
“I can’t cure HD, but I will do what I can to help people live with it or delay the disease’s onset,” Downing says. “If we can figure that out, then we can give people advice on how to live.”
Coping skills in HD couples
Downing’s dissertation research focused on how couples cope with noticeable changes created by HD. In each couple, one partner had tested positive for the HD gene, but had not been diagnosed with the disease — a status called prodromal HD.
“Couples tend not to attribute changes to Huntington’s disease, which seems counterintuitive, unless the changes are something distinctive. They attribute the changes to normal aging or their personality,” Downing says.
“Normalization can be a healthy response. You can normalize life until it’s not normal anymore. These are very brave people who get tested and participate in research.”
Downing’s two-year appointment as a postdoctoral fellow is funded by the National Institutes of Health. Her dissertation work was supported in part by the Neurobiological Predictors of Huntington’s Disease (PREDICT-HD) study at the University of Iowa and by the CHDI Foundation — a private, not-for-profit research organization that supports research on HD therapies.
Joining the PREDICT-HD team
PREDICT-HD is an observational study of healthy persons without any HD motor symptoms. The study aims to find early markers of HD that can be used to test whether treatments prevent or delay the onset of symptoms of HD.
Iowa’s PREDICT-HD team sent Downing to Australia, England, and Canada in 2009 and 2010 to talk with HD-gene-positive people and their companions in order to validate a measure of work function that she helped develop.
Investigators now use that measure to determine whether PREDICT-HD participants have experienced declines in work function.
“Nancy sees links between her clinical experiences as a psychiatric and mental health nurse; data on motor, cognitive, and behavioral changes in people with prodromal HD; and how people with this condition and their families cope with these changes,” says Janet Williams, Downing’s mentor and Kelting Professor of Nursing.
“Her contributions to our work on developing a new measure to document ability to maintain job responsibilities and her analysis of coping with prodromal HD are adding new insights to the scientific literature.”
From practitioner to researcher
Downing describes her UI experience as more journey than destination.
After graduating from the UI College of Nursing in 1998, she began practice at an inpatient medical psychiatric unit. In 2004, she also became a sexual assault nurse examiner.
“My dual interests in mental health nursing and sexual assault gave me a desire to learn more about post-traumatic stress disorder (PTSD) following sexual assault,” Downing says. “I wanted to know what sexual assault nurses could do to prevent PTSD. This, I believe, is where nursing science begins — with a desire to address clinical issues with evidence-based knowledge and the realization that in some cases, new evidence must be discovered.”
Downing became fascinated with genetics nursing while pursuing her Ph.D. at the UI, which she earned in 2010. In 2008, she spent two months at the Summer Genetics Institute — an intensive National institutes of Health research training program. There she learned about the genetic component to PTSD.
“I made the decision to apply to the UI College of Nursing based on its worldwide reputation as a premier nursing research institution,” Downing says. “I was fortunate to learn that the UI College of Nursing is one of the only nursing institutions to have a genetics program.”
After her fellowship, Downing plans to pursue a faculty position and continue her research into genetics and HD.