Kris Kirschner/Eyewitness News
Indianapolis - Thousands of Indiana families are struggling with a disease that has no cure and can be devastating both emotionally and financially. Some of those families are hoping to take their battle with Huntington's disease all the way to Washington.
The faces of Huntington's disease can be found on YouTube. People whose lives were changed and lost through the course of their unwinnable battle.
For Markham Weeks, it only takes a flip through a family photo album to understand the devastation.
"My mom passed away in 2005," Weeks said. "Right now, my aunt has it and my brother has it."
A hereditary disease, Huntington often strikes more than once in the same family. For Weeks, that means two out of three people in a family picture.
"My brother is in his late 30s and is already starting to have that impact on his life," he said.
Huntington's disease causes a change in movement, a deterioration of coordination. But long before the physical symptoms, there is what the disease does to the mind. Thinking, speaking and even making decisions becomes difficult.
"It's those changes in brain functions that make it difficult to work," said Dr. Kimberly Quaid.
At IU's Med Center, where genetic information on Huntington's disease is stored, Dr. Quaid says many afflicted lose their jobs and, thus, their health insurance.
"Many families are destroyed financially," she said.
Some blame what they call an outdated Social Security and Medicare system. A group of Hoosiers are petitioning Congress for change.
The petition for the HD Parity Act would change the law for Social Security disability, in part eliminating a waiting period to receive benefits. Hundreds have already signed, the goal is to reach at least 3,000 signatures before presenting it to Congress.
"As family members, we feel extremely helpless," Weeks said.
It's not a cure, but the hope is, it will help families struggling to cope with a disease that may affect one in every three Indiana families. It's estimated about 5,000 Hoosiers either have, or are at risk for, Huntington's disease.
Huntington's Disease Society of America
