Huntington’s an overlooked killer

Jeff Francis
Posted 4/28/05

Some people who know Alyson Krivanek are surprised she sometimes grounds her 13-year-old daughter, Judy Krivanek. Judy is capable of much of the …

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Huntington’s an overlooked killer

Posted

Some people who know Alyson Krivanek are surprised she sometimes grounds her 13-year-old daughter, Judy Krivanek.

Judy is capable of much of the mischief emblematic of her age, but she likely won’t live into her 20s, and the day may come when she doesn’t recognize her mother. Judy has juvenile Huntington’s disease.

Her mother, however, believes it’s her duty to raise her daughter with strong character, and that includes discipline.

“I still try to keep the bar fairly high,” Alyson said. “I want her days to be happy, but I still need to be a parent. If I just let her walk around like she can do whatever she wants, my fear is that as she regresses she’ll become violent, which is common.”

The Krivaneks enjoyed a reprieve from the pangs of juvenile Huntington’s Saturday when they attended the Hoop-A-Thon, a charity benefit featuring basketball contests and live music at the Gold Crown Field House.

For event organizers and attendees, Hoop-A-Thon was an opportunity to call attention to a disease often overlooked or misdiagnosed. Huntington’s is a hereditary disease that initially manifests itself through clumsiness, tongue-tied speech and an inability to concentrate.

Judy Krivanek’s story is typical of many Huntington’s patients, especially juveniles.

In grade school, Judy was mocked for her awkward speech and poor social and academic skills. She hid in the bathroom when pressures were too great.

It wasn’t until last May that she was diagnosed. Her life expectancy is pegged at 18, with the disease gradually decreasing her physical and mental abilities with each passing year.

When asked about her diagnosis, Judy uses her hands to pantomime tears streaming down her cheeks. The gesture for “sad” is something she picked up from her deaf friends at her new school, Fletcher Miller School, 200 Kipling St.

For people involved in the fight against the disease, the lack of public awareness on Huntington’s is a frustrating trend that may finally be reversing.

Cindy Cunningham, of the Rocky Mountain chapter of the Huntington’s Disease Society of America, said geneticists call Huntington’s the most devastating hereditary disease. Cunningham lost her mother and grandmother to the disease.

“It was misdiagnosed for so many years, so people, even doctors, know so little about this,” Cunningham said. “We’re working more with services and police departments to raise awareness.”

Judy Krivanek spent much of Saturday swooning over celebrity spokesman Billy Aaron Brown, 23, an actor who has appeared in the television show “8 Simple Rules For Dating My Teenage Daughter.”

Brown said he became the national spokesman for the Hoop-A-Thon after his uncle died from Huntington’s.

Brown said Judy, who is a bit shy and is fixated on Harley-Davidson motorcycles, is a good example of the indomitable spirit needed to cope with juvenile Huntington’s.

“I think it’s great that Judy still has the opportunity to be a kid, which is really cool,” Brown said. “She has a really good attitude, and I’ve noticed that attitudes really do matter with this disease, and her attitude is awesome.”

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