URBANDALE, Iowa — Huntington’s Disease is rare. In Iowa, there are only about 300 confirmed cases, but its effects on families are far-reaching.
Huntington’s Disease (HD) is known as the quintessential family disease because every child whose parent has it, has a 50-50 chance of having the fatal gene as well. With symptoms and signs not appearing usually until 30-50 years old, many already have children before realizing they have HD.
Symptoms include movement disorders like jerking and problems producing speech or swallowing, but also cognitive and psychiatric disorders like depression and slowness in processing thoughts.
“Every time you choke on water you think ‘oh this is HD.’ Every time you have memory problems,” Bridget Schneider said.
Schneider lived in fear for five years after finding out one of her parents has Huntington’s disease.
“All those little things are really just a part of daily life, [but] then you start obsessing over them,” Schneider said.
There was a chance she had HD, just like her uncle and father. After their diagnosis, Schneider felt the need to return home to the Des Moines metro and become a personal trainer.
Her biggest client was her father, working out twice a week with Schneider.
“He’s been able to make improvements with a disease that’s regressive, which is huge,” Schneider said.
But throughout every workout, there was that lingering question.
“It feels really selfish to say this, but I would think ‘what if this is me someday?’” Schneider said.
The question can be answered today with genetic testing.
“At first I was like, ‘I’m not going to get tested because there’s nothing they can do about it.’ There’s no cure, why would I get tested,” Schneider said. But the local Huntington’s Disease Society of America (HDSA) changed her mind.
“As they started showing statistics for patterns that they see, they can’t get those statistics without people getting tested,” Schneider said.
After counseling and a simple blood test at the HDSA Center of Excellence at the University of Iowa, she got the results.
“I said, ‘well I don’t have it,’” Schneider said.
Her father’s reaction, a sigh of relief.
“And he said ‘that’s good, that’s really good.’ It was a full sentence and it was super clear. That was one of the clearest moments we’ve had this year I think,” Schneider said.
Still, Schneider struggles with survivor’s guilt and seeing her father’s health deteriorate.
“It’s really nice when you have people who come up to him in the store or church or whatever, even when he’s not answering back. I think that’s one of the hardest parts is seeing people ignore him or assume he doesn’t understand because he will have clear sentences come out of nowhere if you just give him the time,” Schneider said.
HDSA says ultimately it is a personal choice if someone at risk wants to get tested or not.
“The one nice thing is at the Center of Excellence, you can still enroll in Enroll HD and be a part of their program and not know if you have HD or not, because the thing is we need the data,” Andrea Bauer, Chapter President, Iowa Huntington’s Disease Society of America said.
The local HDSA chapter is also holding a Celebration of Hope Gala on November 9th. For more information click here.