Fairfax, Iowa, man fights to raise awareness of Huntington’s disease

By Francie Williamson, Communications Coordinator, Department of Psychiatry

When Jim Hagen of Fairfax met his wife Leslie in the early 1980s, they had no idea she would later develop a terminal illness.

Leslie Hagen

But in the 1990s, after her father, Norman and sister, Lisa, developed symptoms of Huntington’s disease, Leslie decided to get tested at University of Iowa Hospitals & Clinics, and found out she also had the genetic mutation that causes the disease.

“The doctor said she probably had about 25 years, and I thought that meant 25 years until she has to retire. But no, he meant 25 years left to live,” Jim says.

Leslie passed away from complications of Huntington’s disease in May 2019, but the Hagen family’s fight with Huntington’s disease continues.

What is Huntington’s Disease?

Huntington’s disease (HD) is a rare neurological illness that is passed down from one generation to the next and is caused by a mutation in a gene called Huntingtin. If a parent has the genetic mutation, a child will have a 50 percent chance of developing the disease sometime in their life.

Over time, the genetic mutation causes damage to the brain, leading to symptoms including cognitive impairment, psychiatric and personality changes, unsteady gait, slurred speech and weight loss. Although most with the genetic mutation begin exhibiting symptoms between the ages of 30 and 50, some may start showing symptoms later in life (like Leslie’s father Norman) or even in early childhood. The illness is terminal and there is no cure.

UI Hospitals & Clinics is home to one of the nation’s 55 Huntington’s Disease Centers of Excellence. Patients and their loved ones from across Iowa, as well as the world, come to the center for clinical care as well as to take part in a myriad of studies searching for better treatments and hopefully, one day, a cure.

Hagen says having the UI Center of Excellence so close to home was a huge help to navigating Leslie’s HD battle.

“Having them there for the support and being so close, that was everything,” Jim says. “And they supported me. You know, they really tried to get me to understand what was going on.  They were always supportive. They were always right there.”

Jim Hagen of Fairfax holds a wedding photo of his wife, Leslie

Raising Awareness

Jim Hagen says after Leslie was diagnosed with HD, he would accompany her to her appointments at UI Hospitals & Clinics.

“As she progressed, I got to know everybody better down there at the University and I decided at that point in time that I wanted to help fight this thing,” Jim says.

Over the last few years, Hagen has gotten more involved in the national effort to fight HD. May is Huntington’s Disease Awareness Month, and this year, Jim has led efforts to light the UI Stead Family Children’s Hospital and Fairfax State Bank with purple lights on May 10.

“It's been a really rough three years” since Leslie died, Jim says. “But absolutely, I'm trying to just keep Leslie's memory alive. And keep that awareness alive. If you know anybody that has been affected by this thing, and see what it does to the families, then I think you would understand more why we need awareness.”

Thursday, May 5, 2022