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Women in Orange County reveal what it’s like to live with a fatal and rare disease compared to having ALS, Parkinson’s and Alzheimer’s disease at once.
Carrie Bryson, 61, of Westminster, was diagnosed with Huntington’s disease in January this year.
Huntington’s disease is a fatal genetic disorder that causes progressive destruction of neurons in the brain. It affects only about one in 10,000 people and so far there is no treatment.
In light of Huntington’s Illness Awareness Month, Bryson told KTLA’s Chip what her experience was like.
“I started to give speeches and my balance was out,” Bryson said.
When she first began experiencing symptoms, Bryson said she was troubled by the fact that she noticed not only cramps and other movements, but also others.
“I’m self-conscious about it because a lot of people assume I’m either high or loaded or have mental issues,” explained Bryson.
According to medical experts, one of the worst parts of the disease is that many people live what appears to be a completely healthy life in their 30s and 40s before they realize they have Huntington’s disease.
This means that most patients have already started a family by the time they learn that there is a 50/50 chance of passing a fatal illness to their children.
Bryson was 61 years old when he was diagnosed.
She told KTLA she hopes that a treatment can be found.
Leslie Thompson, UC Irvine Brenn, has been studying Huntington’s disease for 35 years and said that there is no cure for now, but there is hope.
“I think it’s on the horizon if we can get treatment by delaying the illness or delaying the onset and treating it over time,” Thompson said.
According to the Huntington Disease Association of America, symptoms usually worsen between 10 and 15 years.
“Symptoms – it’s a cognitive disorder. You can’t perform daily tasks,” Thompson explained. “That psychiatric component is major depression and other features, and then it’s a non-characteristic movement. So it’s really something of the worst of Alzheimer’s disease and Parkinson’s disease and ALS, and it links them all to some degree.”
For more information about Huntington’s Disease, click here.
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