Shedding light on the darkness of her genetic fate

Wednesday, February 25, 2015


Jamie Parish
Jamie Parish uses a positive, proactive approach to living gene positive for Huntington disease (photo by 
Owen Wade)  
 By Christina Colletta

As 29-year-old Jamie Parish sat front and center in a steely glass-walled auditorium on the top floor of the University of Iowa Hospitals and Clinics with a crowd of complete strangers dissecting her family history and questioning her like a doctor questions a patient, her confidence never wavered. 

She didn’t waver as she detailed her grandfather’s initial misdiagnosis and eventual death from Huntington disease, nor as she recounted how her father committed suicide before it was known whether or not he had HD. Not even as she revealed she later tested gene positive and, after experiencing intense depression and loneliness, is finally moving forward. 

Calling Parish strong is an understatement.

But why would she volunteer to participate in what many would consider to be an unnerving exploration of her most painful and private past experiences?

“I want to help,” said Parish. 



Sharing her struggle so others don’t have to

The strangers at the educational seminar Parish took part in were neurologists, psychiatrists, genetic counselors, researchers and students looking to refine their understanding of Huntington disease and the genetic testing process from a patient’s perspective.

“I hope they realize the emotional process of HD. How it changes people’s lives. How there are so many components of the disease to consider,” said Parish.

Parish knows firsthand the importance of having informed and supportive healthcare professionals before, during, and after genetic testing for HD, mainly because she endured the majority of her testing process without it.

When Parish was 16 years old, her grandfather was diagnosed with Huntington disease after years of misdiagnosis. After learning she may have a 50-50 chance of inheriting the disease, Parish immediately decided she would eventually get tested.

“I am one of those people that need to know everything,” said Parish of Des Moines. “I just wish I talked to somebody who had gone through testing before I made that decision so I would have a better understanding of what I would feel after finding out my results.”

The facility Parish went to for testing in Alabama was not a Huntington’s Disease Society of America (HDSA) Center of Excellence and did not have an HD support group. Parish said she often felt like she was the one teaching her doctor about HD instead of the other way around. To make matters worse, under the guidance of one of the ill-informed practitioners, Parish was told she could as easily obtain life insurance after receiving her test results as before, which was unfortunately not the case.

“Now I cannot get life insurance or long-term care because I applied after receiving my test results,” said Parish. 

Without the ongoing support of informed professionals, Parish felt aimless and alone after receiving her HD gene-positive results.

“I was very numb for a very long time and once it hit me, I got depressed,” said Parish. “I was depressed for two years. I thought my depression was a symptom of my Huntington disease, so I went to the [University of Iowa HDSA] Center of Excellence to get answers.”

It was at the UI HDSA COE where Parish was relieved to learn the depression she was experiencing was more a result of receiving the devastating gene-positive test results rather than a symptom of her Huntington disease.

“It was really informative for me, being around medical professionals that actually knew what they were talking about,” said Parish. “There were three doctors that said I wasn’t symptomatic and I actually knew what they were saying was correct. I could finally ask questions and get the answers I needed.”

Parish, with the support of her mother, also decided to go against her gut and follow her therapist’s recommendation to attend an HD support group meeting.

“My therapist encouraged me to go for a long time, but I wouldn’t because in my mind I couldn’t be around someone who was symptomatic, knowing that will be me someday,” said Parish. “Once I went, I felt stupid for not going sooner. I think I would probably still be depressed had I not gone to support group.”

Parish continues to benefit from attending support group once a month in Des Moines (meetings take place every third Sunday at 1:30 p.m., contact facilitator Mark Hillenbrand for more info, 515-277-0814). 

“It’s hard to find people in the HD community because it’s so small and people tend to keep HD private, so the support group is a way for me to find people and connect with others going through similar situations,” said Parish. “Finding a good doctor and talking to other people going through the same thing as me really helped with the loneliness and depression.”

Remapping her life to reach new goals

With the added support of others from the HD community, Parish says she is turning her life around to make a difference.

Jamie Parish radio studio
(L to R) Iowa Public Radio's Ben Kieffer, Kristen Powers and Jamie 
Parish during the Oct. 2 2014 "River to River" talk show. Parish and Powers
shared their HD stories ahead of the UI screening of Powers' film "Twitch,"
which Parish helped organize. (photo by Sean Thompson)

“Now I am just trying to make it a positive thing,” says Parish. “I’m writing a book, volunteering, and on the Board of Directors for the HDSA Iowa Chapter. Now I’m turning it into a good thing rather than the bad thing it has been for so long.”

Parish’s book, which she hopes will help others with the emotional process of undergoing genetic testing, will detail her HD background, experience with the genetic testing process, and how she has dealt with HD since getting the results.

Parish also sees the importance of participating in research. As a participant in the PREDICT-HD study for presymptomatic individuals, she says she is hopeful about the future of HD treatments. She is also an HDSA clinical trial diplomat for the state of Iowa, and will start speaking to groups about the importance of participating in studies. 

“Everybody together can make a difference," Parish said, "which is why we need people to connect and talk about it instead of keeping it a secret, for their own sake, too.” 

Parish admits coming to terms with the fact that she will one day develop the disease is an ongoing part of her life, but her positivity and determination to support others is helping immensely.

“I don’t know when I am going to get sick. It’s just not something I can think about every day,” said Parish. “Nothing could have prepared me. I am a completely different person now and my hopes and dreams have changed.”

Inspired by helping others facing similar situations as she did, Parish has left behind a career in finance and is taking masters-level coursework in social work so she can utilize those skills and techniques with the HDSA Iowa Chapter.

“I am working to help others because I can,” said Parish. “I want to help with going forward.”