UI senior finds her courage being face-to-face with Huntington disease

Tuesday, June 21, 2016


 Emmy planting blue flag
UI HDSA COE Student Editorial Assistant Emmy Szymanski plants blue flags on the lawn of the University of Iowa Pentacrest for an HD Awareness Month display.Editor’s note: On her last day working at the UI HDSA COE, our Student Editorial Assistant Emmy Szymanski wrote about her experience working here. A graduate with honors in English and French Literature, Szymanski is attending the Denver Publishing Institute this summer.

By Emmy Szymanski

Graduation has passed and now summer is here, and looking back at these past four years at the UI, I am surprised by how different I am now. I am no longer intimidated in a classroom of strangers and I love participating in discussions. I have developed a bigger perspective on the world and have acquired new interests. And I have taken on more adult responsibilities, such as managing my finances to account for rent, food, utilities, et cetera. A bunch of my experiences in college have helped to create this new, matured version of myself, and within my last two semesters at Iowa, working for the UI HDSA COE has played a huge role in forming my identity.

This job is, hands down, among the best I have ever had. Working here this past year has taught me a lot—how to effectively edit scientific manuscripts, how to write strong news articles, and how to manage various facets of social media (just to name a few of the things I’ve learned!). Additionally, I was able to meet an awesome team of hard-working people who are trying to make a difference in the HD community, and they have been an inspiration. But as much as I appreciate learning these much-needed skills for my future career and collaborating with these admirable individuals, my experience at the UI HDSA COE has taught me something that has changed my personal life as well. I’ve learned to be comfortable with HD.

Huntington disease used to be a topic that gave me anxiety. As my dad has the disease and my siblings and I have a 50-50 chance of having inherited it, my family definitely made a point of talking about HD. These conversations generally used to make me really nervous for my family’s future and my own, and most of the time I chose to zone out during these discussions. But working for the UI HDSA Center of Excellence has changed my attitude.

Emmy dancing
Emmy Szymanski dances during a swing dancing 
"Lindy Bomb" she organized for HD Awareness Month 
in downtown Iowa City (photo by Owen Wade).

Over this past year, I’ve been face-to-face with HD. I’ve discovered incredible stories of families and individuals living with this disease, I’ve read studies of innovative HD research occurring all over the world, and I’ve met inspirational speakers who won’t let HD stop them. These interactions have helped me find my own courage with HD. Instead of shying away from the topic, I want to talk about it more now than ever. I have started to share my family’s experience with HD with friends, classmates, and complete strangers, and this has been a very rewarding process because more people are becoming aware of HD through my story. Working here has introduced me to the larger community of families and individuals affected by Huntington disease, and I intend to stay involved in any way possible wherever life after graduation takes me.

College is all about learning, growing, and changing as an individual, and over these past four years I have undergone a huge transformation. The classes I’ve taken, the extracurricular activities I’ve taken part in, and the friendships I have made along the way have all helped to create my new identity. My experience working for the UI HDSA Center of Excellence has played a huge role in this as well. Among the many useful things I have learned in this position, I have been inspired to find my strength and my voice so that I can do my part for the HD community and help find a cure.