BANGOR, Maine (WABI) – Imagine being diagnosed with ALS, Parkinson’s and Alzheimer’s…all at the same time.
That’s what Huntington’s disease is described like.
Children of a parent with Huntington’s disease have a 50% chance of inheriting the faulty gene.
Joy Hollowell spoke with two Maine women whose family members have the disease.
“Well, it’s devastating. It devastates families, it’s a relentless difficulty, it gets worse and worse.”
Huntington’s Disease has been in Nancy Patterson’s family for at least four generations during her life time.
“If you have a parent with Huntington’s, you have a 50-50 chance of inheriting it,” says Patterson. “And because of that, it’s widespread in families.”
Patterson is the Maine Affiliate Chair of the Huntington’s Disease Society of America. She says most symptoms show up in people between the ages of 30 and 50.
“Takes away a person’s ability to walk, talk, think, reason, eat over time,” she explains.
“We call it the McEachern curse because it came from my Grandfather McCEachern.”
Jane Brann remembers her uncle flailing his arms around back in the 1950s.
“They thought he had Parkinson’s, no one had ever heard of Huntington’s,” she says.
He committed suicide. 20 years later, his son would also take his own life because of the disease. And in 2016, Jane’s brother, diagnosed with Huntington’s, also committed suicide.
“He showed symptoms earlier,” says Brann. “And he jumped off the Verona Island bridge.”
Research shows that suicide is 12 times more frequent among Huntington’s patients as compared to the general population.
“When you know your parent has Huntington’s Disease, you have to make the decision of whether you want to be tested,” says Brann. “And that is a very difficult decision.”
In fact, fewer than 10% of those at risk choose to be tested.
Both Nancy and Jane did, citing the advantages of participating in clinical trials if the test came back positive.
“Right now, we’re in the most promising stage we’ve been in ever since the gene was discovered,” says Brann. “It’s not going to be a cure, as far as we know, but it can reduce symptoms or delay them.”
Both Nancy and Jane do not have the defective gene that causes Huntington’s Disease.
Sunday, October 4th the Maine Team Hope Walk will take place to raise money for the Huntington’s Disease Society of America.
It’s virtual this year, with you choosing the course.
Registration is free. For more information log onto https://maine.hdsa.org/
There’s also a silent auction. Bidding is open until November 15th.
For more information on Huntington’s Disease, log onto https://hdsa.org/
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