Local woman shares her story of having Huntington’s Disease
MILTON, Del.- Huntington’s disease, some of you may have heard of it, but some of you may have not.
It’s a fatal genetic disease that affects nerve cells in the brain.
“It only effects 40 thousand American’s, most people don’t know what it means to have HD,” Louise Vetter, HDSA’s CEO, President
And while the disease is rare, Amy Aungst, a Delaware resident tested positive for Huntington’s in 2015.
“Like the worst news you could ever get, I just hit bottom, I just cried,” Aungst said.
The CEO and President of Huntington’s Disease Society of America, which supports people who have the disease, told me that HD can steal your movement, your moods, your cognition, and your behavior.
“If one of your parents, has the disease you have a 50/50 chance of inheriting the gene that will cause the symptoms,” Vetter said.
Aungst said she knew she had the possibility of getting HD because her mom and uncles had it.
She said the day she found out her mom had Huntington’s is when she started planning ahead.
“It was that day that I decided in the future that I wanted to prepare, I wanted to know what could happen to me, so that’s when I decided when i was ready to have a family that’s when I’b be tested,” Aungst said.
So, that’s what Aungst did.
She got tested sometime after marrying her husband, once the results came back that she had HD it completely changed her life.
“When we did find the news the only thing that really was the hardest was figuring out how to have a family and not pass this gene down to my children,” Aungst said.
In order to break the HD cycle in her family, Aungst and her husband adopted two kids.
And with a house filled with laughter from these two boys, Aungst said she has not let this disease hold her back.
She encourages others who have HD to do the same, and she wants them to know that support through this has been unimaginable.
“You might have this fatal disease, but you can still make the most out of it, it has not stopped me from working, it has not stopped me from having a family,” Aungst said.