From behind the scenes to by participants’ side

Monday, December 16, 2013

Bella De Soriano Green Background

By Sean Thompson
UI Huntington's Disease Society of America Center of Excellence Public Relations Coordinator

The first thing you notice about Bella De Soriano may be her southeast London accent or her fiery red hair. But it's her genuine disposition, her good-natured quick wit and her desire to help other people that stick with you and more fully help define who she is.

Like many who work in the Huntington disease (HD) research field, De Soriano's altruistic nature is one of the main reasons she sought a position as a research associate at the UI Huntington's Disease Society of America COE, a position she's held since September. But much like her journey from growing up in London to studying anthropology at the UI, her path to working here was far from conventional.

As an undergraduate, De Soriano worked as a student systems administrator in the UI HDSA COE, testing data collection software used in the PREDICT-HD study and preforming other computing tasks. She says she didn't know anything about Huntington disease upon taking the job, and had gleaned only a basic understanding of the disease from the job.

"Working on the information technology side, you don't really get to come in to contact with people from HD families or the specifics of the disease," De Soriano said.

It wasn't until a screening for staff of the documentary "Do you Really Want to Know" that she learned more about the disease and how it affected people on a daily basis. The award-winning film follows three HD families, addressing issues of genetic testing and living with Huntington disease. De Soriano said watching the film was an eye-opening experience for her.

"Things that seem trivial to me are a big deal for people with Huntington disease," she said. "Seeing how the disease affected people helped me decide to go for a permanent position where I would be seeing people directly and helping in a different way."

Lending an understanding ear

A focus on medical anthropology during her studies meant De Soriano was familiar with many of the issues like genetic testing and quality of life that Huntington disease families have to confront. In her position as a PREDICT-HD coordinator, De Soriano values the opportunity to learn more about these complex issues by listening to her participants and hearing how they've faced them.

Aside from helping participants complete the various components of the visit and ensuring proper collection of data, De Soriano says listening is one of the most important things she does as a coordinator. Participants may not be thinking about Huntington disease every day or may be pushing it to the back of their minds, she says, but when they are here, they want to talk about what's going on in their lives relative to HD, because there's a level of comfort they get at an HD center that they can get few other places.

"I think it's nice for them to have someone there who knows what they're talking about and can just listen instead of having to explain all these things about HD," De Soriano said. "We are someone for them who have an understanding of where they're coming from."

From snobby to smitten with Iowa

After two years working in her hometown of London as an office coordinator, De Soriano decided it wasn't for her. Her mother is originally from Virginia and De Soriano has dual U.S. and British citizenship. So when her mother tossed out the idea of attending the same university she had attended as an undergraduate, De Soriano decided to make a bold choice and blindly go for it. The first time she set foot on campus was just before the 2008 fall semester.

"I think I cried a fair amount," she recalls upon arriving in Iowa. "It was a huge culture shock and I'll admit that I was quite snobby when I first got here. I thought it had nothing to offer me and I wasn't going to stay here. But I was proven wrong."

She adjusted to and immersed herself in campus life in the Midwest. She began rock climbing at the Campus Recreation and Wellness Center, became active in the Lutheran Campus Ministry group and began volunteering at the Iowa Medical and Classification Center in Coralville. Now, she lists Iowa City and London as her top two favorite cities in the world.

"Iowa City has been good to me," she said. "I live downtown so it's easy to get places, everything I need is close by, and it's peaceful here."

Making research enjoyable for her participants

When designing a study like PREDICT-HD, much attention is given to making the experience as easy and trouble-free as possible for the participants. Ultimately, experienced researchers will tell you the quality of the participant's experience comes down to how comfortable he or she felt and how smoothly the visit was run, two things the study coordinator plays a large part in. This ability to have a direct positive impact on someone's research experience is De Soriano's favorite part of the job.

"I like seeing how my work can affect people in a beneficial way," she said. "My first visit was great and everyone left happy, and they seemed like they had a good time, which I don't think you expect from a research visit. Knowing that someone had a good visit and part of the reason they did was because of me is very rewarding."

Click here to read a Q&A with De Soriano