By Seth Voorhees
A Western New York woman is sharing her story to raise awareness about a fatal genetic disease that’s had a devastating impact on her family, a rare disease that she herself has.
Support is something Tammy Stewart can’t get enough of.
“I have a lot of support groups,” Stewart said. “Everybody says that I'm like an inspiration, but I don't see it that way.”
The Geneseo woman is used to giving support to others.
“Between my dad, my siblings, and my children I've always been a caregiver,” she said.
For four decades, a rare, fatal genetic disorder has ravaged her family.
“Everybody knows about Alzheimer's and ALS and Parkinson's, but nobody knows about HD.”
The symptoms of Huntington’s disease are described as a combination of the three. Often misunderstood, they range from mood swings and depression to slurred speech and involuntary movements.
“My dad, he would have fits and walk downtown in the middle of the night,” she said. “And just do random, weird things that you can't control.”
Because of that, some labeled Tammy’s dad Ray as “the town drunk.” He was diagnosed with HD when she was six. He eventually died from Huntington’s, as did her brother Mike and sister Debbie.
The disease is hereditary and there is no cure. And now, Tammy’s sister Laurie is in the advanced stages of HD, a disease found in five of six siblings in the family, including Tammy, the youngest.
“That’s five out of six of us,” she said. “And this is the third sibling that I'll be losing. And my dad. It’s a horrible thing.”
Tragically, Tammy’s mom, who also cared for her father for years, died in a car crash in March. Stewart says with early detection and medications, she’s able to keep her HD symptoms in check. She worries about her three children, who she says have a 50-50 chance of carrying the HD gene.
“There's a lot of things my head does that I absolutely have no control over,” she said. “And I just have to learn to try to nip it in the bud and figure out. You know, the best way for me to live my life, and right now she's my life."
Stewart is now her sister’s caregiver. She says because of her own HD diagnosis, she cannot get life insurance. She is hoping for federal approval of the Huntington’s Disease Parity Act,” which would waive the current mandatory two-year waiting period for Medicare benefits for patients after qualifying for Social Security disability insurance. New York Democrat Senator Kirsten Gillibrand is one of the bill’s sponsors.
“This is who I am,” Stewart said. And these are my little quirks. Unfortunately it's cards I was dealt.”
It’s a hand she has no choice but to play.
“I got to try to keep fighting and just do what I can do,” she said.