An Orange County woman is opening up about what it’s like to live with a fatal, rare disease that’s been compared to having ALS, Parkinson’s and Alzheimer’s all at once.
Carrie Bryson, a 61-year-old Westminster resident, was diagnosed with Huntington’s disease in January of this year.
Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It only affects about one in every 10,000 people and, so far, does not have a cure.
In light of Huntington’s Disease Awareness Month, Bryson told KTLA’s Chip Yost what her experience has been like.
“I started slurring my speech and my balance was off,” Bryson recounted.
When she first started experiencing symptoms, Bryson said she was bothered not only by the twitching or other movements – but the fact that other people noticed, too.
“I’m self-conscious about it because a lot of people stare, or assume that I’m either high or loaded or, you know, have mental issues,” explained Bryson.
One of the worst parts of this disease, according to medical experts, is that many people live what look like perfectly healthy lives into their 30s and 40s before they realize they have Huntington’s disease.
This means that most patients have already started families by the time they learn they have a 50/50 chance of passing a fatal disease onto their children.
Bryson was 61 when she was diagnosed.
She told KTLA that she hopes a cure is found – if not in time for her, then in time for her children.
UC Irvine Bren professor Leslie Thompson, who’s been researching Huntington’s disease for 35 years, said that while there currently is no cure – there is hope.
“I think it’s on the horizon that we will have at least treatments that delay the disease or delay onset and with time, hopefully a cure,” said Thompson.
According to Huntington’s Disease Society of America, the symptoms usually worsen over the course of 10 to 15 years.
“The symptoms – it’s cognitive disability. You can’t carry out daily tasks,” explained Thompson. “Its psychiatric components are major depression and other features and then uncharacteristic movement. So it really is kind of the worst of Alzheimer’s and Parkinson’s and ALS, bringing all those together into one disease to some extent.”
To learn more about Huntington’s disease, click here.
