BY LISA PERKINS
TRAVERSE CITY — Uncertainty.
Jennifer Lewis says her life has been filled with uncertainty since the day her mother was diagnosed with Huntington’s Disease, when Lewis was just a baby.
“Everyone’s life is filled with uncertainty, no one knows if they will get cancer, what will happen to them. I just try to think of it like that,” said Lewis, 32, of Traverse City.
Huntington’s Disease is a devastating, hereditary, degenerative brain disorder that results in a loss of cognitive, behavioral and physical control, and for which there is presently no treatment or cure.
“My mom was diagnosed at 28 and lived with the disease for 19 years, the last seven in a nursing home,” said Lewis, quickly pointing out that neither she nor her older brother have shown any signs of the disease that usually hits at midlife.
According to the Huntington’s Disease Society of America, each child of a person with the disease has a 50/50 chance of inheriting the fatal gene and everyone who carries the gene will develop the disease.
“In terms of FDA-approved treatments, there are no disease modifying treatments that have become available, though some very, very exciting breakthroughs have been seen in laboratories and may move on to clinical trials,” said Fred Taubman, director of marketing and communications for the HDSA.
More than 30,000 people in the United States are currently diagnosed with Huntington’s and more than 250,000, like Lewis, are at risk.
“I know that I have a 50/50 shot and that if I do have it, my kids would have the same percentage chance that I do,” said the mother of two.
Genetic testing is available to determine if the mutated gene has been transmitted, but Lewis says she has decided to pass on that option for now.
“I could get tested, but I don’t know which is worse, to not know, or possibly to find out that I had it and could do nothing about it,” she said.
Lewis has chosen, however, not to just sit back and wait.
She is among the members of the HDSA’s local chapter who will hold Team Hope Walk for HD on Saturday, Sept. 15.
“So many people have never even heard of the disease. I want to spread the word about it and help work toward finding a treatment,” she said.
All proceeds from Team Hope Walk for HD benefit the Huntington’s Disease Society of America.
“We give support to caregivers, community services and research,” Taubman said.
The inaugural Team Hope Walk for HD begins with registration at 9 a.m. and walk at 10 a.m., Saturday, Sept. 15 at F&M Park in Traverse City. Registration is $15 per walker, children 17 and under are free.
Registration is available by mail to PO Box 72, Richland, MI 49083; make checks payable to HDSA, or online at www.firstgiving.com/hdsa-greatlakes/traverse-city-team-hope-walk
For more Team Hope Walk information, email Jennifer Lewis at Jenniferannelewis@hotmail.com.
For more information on Huntington’s Disease, visit http://www.hdsa.org/ or call 1-800-345-4372.