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Utah group creating awareness of rare devastating disease

SALT LAKE CITY (ABC 4 News) - It's a disease you might not have heard of-- a lot of people haven't. Huntington’s disease is so rare only about 245 Utahns have been diagnosed.
SALT LAKE CITY (ABC 4 News) - It's a disease you might not have heard of-- a lot of people haven't. Huntington’s disease is so rare only about 245 Utahns have been diagnosed.

There's a new effort to bring awareness to this disease and some like Jerris Herrera, 34, believe it's the only way to get a cure.

For Herrera, living with a neurological disease affects her daily life in the smallest ways, “Some days it's hard to put on make-up,” she said. “Washing dishes, dropping and breaking everything.”

But also there are major disruptions. “I have slurred speech, trouble moving my feet, balance has been off,” she said. “I actually lost my job because of it, they thought I was on drugs.”

Doctors diagnosed Jeris last year. HD is a genetic condition affecting both the mind and the body. Those who have a parent with the gene have a 50 percent chance of inheriting it. In Jeris' family 20 members have been diagnosed.

“This is really devastating for families where every other family member will eventually be affected,” said Dr. David Shprecher, DO, University of Utah Neurology Dept.

Dr. Shprecher, who diagnoses and treats HD patients in Utah, believes it’s important more people especially law enforcement learn about the disease.

“This is one that isn't really known about or talked about on the force and there have been instances where people felt that they were misunderstood and actually given DUIs or accused of shoplifting for example,” he said.

On top of the discrimination, adults diagnosed are given only a 20 year life span. Jeris holds out hope for a cure. “Research is the only thing that's going to help find that cure,” she said.

Right now there is no cure or a way to reverse the course of Huntington’s disease. The University of Utah is part of a national study group conducting research on the gene.

There is currently a push to bring a chapter of the Huntington Disease Society of America to Utah which would bring services to patients in the state.

If you'd like to help with the effort, there is an annual Hope walk on Sep. 21 in West Jordan.

Click here for more information.
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