Documentary: You may have a hereditary disease, would you want to know?

When Jamie Parish was 25, she made a wrenching decision: to get tested for the genetic condition that causes Huntington's disease.

It was a choice she wrestled with for years.

Her grandfather got sick when she was 16. For years, she and her family watched him suffer before he was finally diagnosed with the disorder. That week, her own father - his son - committed suicide.

Huntington's disease is an inherited brain disorder that results in the progressive loss of mental faculties and physical control. Everyone has the Huntington's disease gene, but those that inherit the expansion of the gene will develop the disease and have a 50 percent chance of passing it on to their children.

Parish wanted to know - did she also carry the expanded gene that her grandfather had and that her father feared?

For many children of people with Huntington's disease, that's information they don't want to have. Deciding to get tested isn't easy, and many don't want to live with the knowledge they will one day get the degenerative disease, which has no cure. There are also issues of potential genetic discrimination - though the law prohibits denying health insurance based on a genetic test, life insurance and long-term care insurance policies could be hard to obtain for those who test positive.

Parish says she wanted to know partly so she wouldn't have to wonder any more and partly for family planning purposes - she doesn't want to pass the expanded gene on to children of her own.

'It was a very difficult choice. I went through three different counseling appointments,” she says. 'I had panic attacks while waiting for my blood work to come back for the test.”

She tested gene-positive, which means she will someday develop Huntington's disease. Despite the counseling and years of thinking about the test, the news sent her into depression.

'I was kind of numb and in shock at first, for about a year,” she says. 'Then I started getting really depressed. I'd been depressed before, but it wasn't anything I couldn't pull myself out of. But this time was different.”

Her mother eventually came to get her from her home in Alabama and brought her back to Iowa, where she connected with doctors and resources at the University of Iowa. The UI has a Huntington's Disease Society of America Center of Excellence, one of 21 such centers around the country.

The center offers care and support from doctors and staff who specialize in Huntington's disease and also conduct research on the disease. Parish also connected with the Iowa chapter of the Huntington's Disease Society of America and a support group for people impacted by Huntington's disease.

Today, five years after testing gene-positive and one year after returning to Iowa, she is the chapter's vice president. Living in Des Moines, where she is finishing her real estate license, she works to share her story and raise awareness about Huntington's disease.

'What helped me most was the support group and the UI,” she says. 'I felt so alone for so long. Now I volunteer a lot and try to tell my story, so other people don't have to go through what I went through. It's helped a lot just to know that I'm doing something that's meaningful.”

The Huntington's Disease Society of America estimates that one in every 10,000 Americans has Huntington's disease, and more than 250,000 others are at-risk of having inherited it from a parent.

Another woman, Marianna Palka, made the same choice as Parish. But she did so in front of cameras. The UI's Huntington's disease Center of Excellence will screen, 'The Lion's Mouth Opens,” the documentary that came from that footage, on campus Thursday. A discussion will follow.

Documentaries like 'The Lion's Mouth Opens,” directed by Lucy Walker, can help bring Huntington's disease into the public eye, says Parish. That's important.

'The biggest thing is there are not a lot of people who know what Huntington's disease is. I tell people to each tell one other person. If everybody tells one person, word will spread,” Parish says.

Symptoms of Huntington's include personality changes, mood swings, depression, forgetfulness, impaired judgment, unsteady gait and involuntary movements, slurred speech ,and difficulty swallowing.

'When they see somebody that is sick, people stare, sometimes,” Parish says. 'If more people knew what it was, that would help.”

Symptoms of Huntington's disease usually start appearing between the ages of 30 and 50 and will worsen over the next 10 to 25 years. Eventually, they will lead to death through complications such as pneumonia or heart failure.

Deciding whether to get tested is a deeply personal and difficult choice. Only about seven to 10 percent of people at risk for Huntington's decide to get tested, says Sean Thompson, public relations coordinator for the UI's Huntington's Disease Center of Excellence. Even a negative test can be hard to deal with. Parish says a friend who tested gene-negative wrestles with a type of survivor's guilt because she is the only one in her family not to inherit the expanded gene.

Parish says, to her, the most important thing is for people to support their friends and loved ones affected by Huntington's disease, whether they have the disease, are at risk or have family members who are.

'The most difficult thing for me is that people don't really know what to say. By them not saying anything, you feel you're really alone,” she says. 'If you know anyone who is going through that, just be there for your loved ones.

What: 'The Lion's Mouth Opens” documentary screening

When: 7 p.m. Thursday

Where: University of Iowa Pappajohn Business Building, W10 Buchanan Auditorium, 21 E. Market St., Iowa City

Cost: Free