VIRGINIA BEACH, Va. — Huntington's disease is rare — and rarely talked about. A Virginia Beach group is working to change that during Huntington's Disease Awareness Month.
Marie Clay, a Huntington's disease advocate and mother, describes the illness in stark terms.
"It's described as the cruelest disease in the world because it's a combination of Alzheimer's, ALS, and Parkinson's disease all at the same time," Clay said.
Clay's daughter, Laurie, has been living with the disease for the past 26 years.
"Currently Laurie is nonverbal. She needs 100% assistance with everything. She's on a feeding tube," Clay said. "It's very difficult to get to this point, but we're all fighters here and we fight and we just hope for the best."
Huntington's disease is a genetic brain disease that deteriorates movement, mood, and behavior control, generally, between the ages of 30 to 50.
Laurie is one of 41,000 symptomatic Americans, according to the Huntington Disease Society of America. Every child of a parent with HD also has a 50/50 chance of inheriting the disease so there are more than 200,000 people at-risk of inheriting the disease.
Because it is so rarely discussed, Clay and her family are hoping to change the narrative — for Laurie and others living with the illness.
"We need to educate people. We need to get the word out there like other diseases," Clay said.
The group can be found at Mount Trashmore every Friday in May from 1 to 3 p.m., handing out pinwheels, educational materials, and smiles.
For Clay, the motivation is deeply personal.
"Honestly, it's my way of coping," Clay said.
"And I promised Laurie when she was first diagnosed that I would advocate," Clay said.
She advocates alongside Laurie's longtime partner, Michael Harris Sr., and their son. Michael is Laurie's full-time caregiver.
"Being a full-time caregiver is very taxing, it's very demanding, it's very time consuming. It takes up all your time. I'm listening for her even in my sleep," Harris said.
According to AARP, 1 in every 4 adults is a caregiver. Harris describes the role as a labor of love.
"Sometimes love is when you would rather be anywhere else doing anything else for yourself but you're there for the person who needs you and you realize that that's your calling is to be there for someone out of love," Harris said.
There is currently no cure for Huntington’s Disease, but advocacy, research, and fundraising make a difference.
The group will be at Mount Trashmore every Friday in May from 1 to 3 p.m. Clay said she hopes the outreach connects with people who may not yet know they need it.
"Hopefully somebody may know somebody with Huntington’s, and we can share that information [and] connect with them the way I connected with you," Clay said.
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