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SALT LAKE CITY — It's a cruel disease—one that slowly changed Jeanine Thatcher Bosch's personality, mood, mental abilities and caused uncontrollable jerking movements. It's a family legacy that is also a crucible.
"We were left on a weekend to figure out what Huntington's was, and the Internet is how we learned about Huntington's," said Becky Bosch Blaine, Jeanine's daughter. "It was very traumatic.
Blaine has a 50/50 chance of having Huntington's disease, a rare inherited condition where nerve cells in the brain break down over time. A genetic test could tell Blaine her fate. After years of counseling and thought, she's ready to know.
Her brother, Mike Bosche, tested positive at 45. A father, he once worked at an international import-export company. Now, at 61, he's struggling.
"I think his world is getting a little bit smaller," Blaine said. "He doesn't get out."
In patients who have the gene, it's difficult to predict when the storm will hit.
"That is why it's very important that people who have a family history of Huntington's have genetic counseling before and after getting the test," said David Shprecher, DO, University Health Care. "Not just to make sure they're ready to receive this kind of information, but also so they understand there may be some uncertainties in the test results."
We were left on a weekend to figure out what Huntington's was, and the Internet is how we learned about Huntington's. It was very traumatic.
–Becky Bosch Blaine, Jeanine's daughter
Doctors can detect abnormalities in CT scans of patients with HD. Right now in clinical trials in Europe and Canada is a technique called gene silencing, a drug that prevents onset of symptoms by blocking the bad gene. It could also lead to treatments in other brain diseases.
Medications can now lessen symptoms and help people like Jeris Herrera. She and Blaine are advocating for better treatment, but it took years for Herrera to come to terms with her diagnosis. "I fell apart," she said. "I went on a path of destruction. And I ended up realizing I have to do something."
Herrera recently delivered her first child — a surprise, she said. Though she's grateful for the baby, she said she worries about passing on the disease. "Every day, it's my biggest fear."
Herrera is facing the fire of this difficult diagnosis. She and Blaine want University Hospital to become a Center for Excellence, improving care and resources for HD patients and their families, like Blaine's brother. They hope the hospital can give what he and other patients need most, "to feel hopeful, that somebody knows a little more that you do," Blaine said.
They can't stop this family crucible, but they can make a difference.
The disease can last 10 to 25 years or more. If you'd like more information, including details about an upcoming walk to raise money for research, visit this website or their Facebook page.
