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.
TRAVERSE CITY — Uncertainty.
Hidden birth defect lands laborer in emergency room
In late November, Josh Drake met with his bosses over a breakfast of hash browns and sausage. It was then he learned he was getting laid off for the winter.Continued ...
Rob Ford: Spread cheer one cookie at a time
It’s the holidays, so here is a recipe for you. Preheat your oven to 350°, and line cookie sheets with parchment paper.Continued ...
Body&Soul in Brief: 12/21/2013
Christmas worship; candlelight service; Unity holds Christmas services; and more.Continued ...
- Body&Soul Newsmakers: 12/21/2013
- Blood Drive Calendar: 12/21/2013
What happens when parents don't like to play?
Silvana Clark spent 10 years as a parks and recreation supervisor for the city of Bellingham, Wash., yet when it came time to raise children, there were certain things she just didn’t love to play.Continued ...
Michigan helmet use falls in wake of law change
Seventy-three percent of Michigan motorcyclists wear helmets, down from seven years ago when almost all riders used them, according to a state report released Monday.Continued ...
Antibiotics in meat to be phased out
Citing a potential threat to public health, the Food and Drug Administration is taking steps toward phasing out the use of some antibiotics in animals processed for meat.Continued ...
- Saturday, December 14, 2013
Select home to get new high-efficiency furnace
A warm house for the winter is something many families take for granted. And it’s something Leslie and Bob Roe have spent the past seven years trying to give to those in need.Continued ...
Adapted in TC: Five years on paper and still making a difference
Five years ago this month, I began writing this column about living with a disability. Sixty-two columns later, I’m struck by what I’ve learned.Continued ...
Body&Soul in Brief: 12/14/2013
Fibromyalgia support group meets; Advent activities at Bethlehem Lutheran; program on hip pain treatment options; and more.Continued ...
- Blood Drive Calendar: 12/14/2013
- Body&Soul Newsmakers: 12/14/2013
Gene therapy scores big wins against blood cancers
In one of the biggest advances against leukemia and other blood cancers in many years, doctors are reporting unprecedented success by using gene therapy to transform patients' blood cells into soldiers that seek and destroy cancer.Continued ...
New drug, study show breast cancer promise
A novel way to speed the testing of cancer drugs and quickly separate winners from duds has yielded its first big result: an experimental medicine that shows promise against a hard-to-treat form of breast cancer.Continued ...
Temperance union targeting pot
The mansion that serves as Maine headquarters of the Woman’s Christian Temperance Union lay largely fallow until recently, with drug needles, liquor bottles and pornographic magazines littering the grounds.Continued ...
- Saturday, December 7, 2013
'Messiah Sing' ushers in TC holiday season
David MacDougall considers himself the kind of singer who sounds better singing with a crowd than on his own.Continued ...
Rob Ford: Spread holiday cheer with eye contact
‘Whatever you do, don’t make eye contact” I said to myself. “It’s OK to look at your hands, look at your shoes, look at his beard or look at anything else, but just don’t make eye contact.”Continued ...
Body&Soul in Brief: 12/07/2013
"Pangea's 4 Peace" fundraiser; Parkinson's Support Group Christmas party; Christmas cookie sale; and more.Continued ...
- Blood Drive Calendar: 12/07/2013
- Body&Soul Newsmakers: 12/07/2013
Clinic model replicated nationwide
What began two decades ago on Hilton Head Island as a free clinic using retired physicians and volunteers to care for the working poor has become a model for dozens of similar clinics nationwide.Continued ...
Feds give states incomplete Medicaid data
People shopping for insurance on the federal marketplace may be informed they’re eligible for Medicaid and that their information is being sent to state officials to sign them up.Continued ...
Forced C-section is ruled justified
A newly released court judgment says that doctors were medically justified in forcing a woman to have a cesarean section last year because it was in her best interests.Continued ...
- Saturday, November 30, 2013
Mental Wellness: Parenting and those launchpad errors
I was recently at a book signing event for my new parenting book. I had five separate moms that came up to me and joked, "Do you have a book for how to get your adult kids to move out of your house?" I couldn't believe that five moms all made the samContinued ...
- Hidden birth defect lands laborer in emergency room