By Adelle Whitefoot
ISHPEMING – Some diseases can bring suffering to an entire family – tearing it apart and making it difficult to carry on. Amanda Meadows has seen the heavy toll Huntington’s disease can take – it’s been affecting her family for four generations. And now it has afflicted her.
An inherited brain disorder, Huntington’s disease results in the progressive loss of both mental faculties and physical control. Meadows, 30, of Ishpeming was diagnosed with Huntington’s two years ago. Her mother, Teresa McGuire of Ishpeming, was diagnosed four years ago.
“It’s a degenerative neurological disease, which means that it creates a mutated protein and that protein eats away at healthy cells in your body, so it affects your brain,” Meadows said. “So a lot of people with Huntington’s disease have emotional depression problems and anger problems. Physical problems are involuntary movement and as the body degenerates you basically become a vegetable in your own body.”
According to Huntington’s Disease Society of America, the symptoms usually appear between the ages of 30 to 50, and worsen over a 10- to 25-year period. HDSA estimates that one in every 10,000 Americans have Huntington’s and more than 250,000 other are at-risk of having inherited it from a parent. A child that has at least one parent with the gene has a 50 percent chance of developing the disease themselves.
“It’s a very difficult disease to live with,” Meadows said. “You know your own mortality basically from the time you have onset. You know you’re going to have a limited time in your own body.”
Two years ago, Meadows said she began experiencing involuntary movements, which she knew was a symptom of the disease. Even though some people don’t want to get tested because they don’t want to know what their fate is going to be, Meadows said she decided to get a test.
“When the physical symptoms start to show, what can you do to stop or slow them down?” Meadows asked. “There is no cure, there is no suppressant drug for this disease currently. There’s only research and that’s the main reason I wanted to talk about this disease, to give my community exposure to it, show that it does exist in their community and it is something people suffer from.”
Meadows has dedicated herself to this task. She said it’s crucial – not only for her but for others suffering – to raise research funds. HDSA helps people with Huntington’s find resources, with finances, with Social Security disability issues and with fundraising for research. Meadows is raising funds to help the HDSA’s mission.
“Right now I’ve dropped off ‘Hearts for Huntington’s,’ which are $1 hearts that people can write their names on as just a small donation to the society,” Meadows said. “I’m also currently working with Brogie’s Tavern in Ishpeming to set a date in April to hold a fundraiser benefit to help raise money.”
These hearts are currently available at Brogie’s Tavern, Martin Sports Apparel in Ishpeming, Kolor 2 Dye 4 and Ma and Pa’s Laundry in Marquette, as well as both PC Medic locations. Meadows said she is also looking for other businesses willing to carry the hearts.
“I just want there to be a cure in the future for my family,” Meadows said. “I want there to be a cure for my kids, my grandchildren, by great grandchildren and people that I may never see in my life. But most of all I want to know that they are going to be OK and I want to know that they aren’t going to live this daily torture.”
To donate to the HDSA contact Deborah Boyd, Great Lakes Regional Development Director, Huntington’s Disease Society of America, P.O. Box 72, Richland, MI 49083 or by email at firstname.lastname@example.org. Checks should be made payable to HDSA. Donations can also be given to Amanda Meadows, who can be contacted at email@example.com.
For more information on Huntington’s disease visit http://www.hsda.org.