LUFKIN, TX (KTRE) - An east woman is spreading awareness for an incurable brain disorder that is rarely talked about. Huntington disease, it's a fatal genetic brain disorder that kills nerve cells in certain parts of the brain.
"A lot of people view it as a death sentence to know that they're going to have Huntington disease," Chasity Boatman, an advocate for Huntington disease said.
It's a disease that not a lot of people know about, but is gaining more momentum and attention. It's a condition that hits close to home for Boatman.
"My grandmother passed away when my father was a child from Huntington disease," Boatman said. "Out of three of his siblings two are HG positive. My aunt Carol passed away from Huntington disease, and now my aunt Terri is battling Huntington disease."
It's been an emotional roll coaster for her family. The disease caused her to lose her aunt Carol when she was in the 6th grade.
"Huntington disease made her a shell of her former self," Boatman said. "When I knew her she was bound to a wheelchair, her husband would have to blend all of her foods for her, and she wasn't able to hold her son or have a conversation with him."
The disease has affected several members of Boatman's family, and because her father's parents had the mutated gene, he and her two cousins have a 50% chance of inheriting it.
"My dad knows that it's all up to the big man upstairs," Boatman said. "All I can do is fight for my family the best way I know how, which is through advocacy and fundraising."
Boatman on the other hand won't be affected by the disease.
"I don't have a chance because I'm adopted, but I feel like that's one of the reasons I was adopted into this family, to fight for my family to help take care of them," Boatman said.
Boatman shinned a light on this disease through social media and is dedicating her life to finding a cure.
"It's very difficult to come to terms with that's going to be the way you're going to die and there's not a lot of support," Boatman said.
There isn't a cure for Huntington's disease.
Chasity is currently raising money for the Huntington disease walk. Boatman said her goal is to raise $1,000 by February 17th.
"There is currently medication that you can take to lessen the symptoms, but there is no medication you can take to cure the symptoms or the disease itself," Boatman said.