Everyone knows Woody Guthrie for his impact on American folk music and many people associate him with the debilitating genetic disease that left him unable to perform and caused his death in middle age.
What many people may not know about Guthrie was two of his daughters from his first marriage inherited Huntington’s disease too.
“Both of my aunts died from complications of Huntington’s,” said Christina Scruggs, a Gilbert resident, related to Sue and Gwen Guthrie on their mother’s side. “I still have cousins who have a chance of getting it.”
While Scruggs’ grandmother divorced Guthrie and later remarried, their two oldest children inherited their father’s genetic disease, Scruggs said. Because she is not related to Guthrie, she’s not at risk for developing the disease.
“Children have a 50 percent chance of inheriting the disease,” said Dr. Win Toe, a neurologist at Banner Baywood Medical Center.
On Nov. 17, the Arizona chapter of the Huntington’s Disease Society of America will have a 3/4-mile Hope Walk to help fund research, clinical trials and support groups.
It typically strikes people between the ages of 30 and 50 years old, Toe said. Many times, that means people diagnosed with Huntington’s already have children by the time of their diagnosis.
However, now many people choose to be genetically tested before getting married or deciding to have kids if they know they have a chance of inheriting it, Toe said.
The average patient lives about 20 years after the onset of symptoms, he said.
The progression is slow, Toe said. Symptoms include cognitive, motor and psychological symptoms. “With the movement disorders, one of the first symptoms is shaking hands, which they try to hide as intentional,” Toe said. “Patients often experience anxiety and irritability and develop a low threshold for anger.”
One in three patients develops depression, he said.
“There is only one medication currently approved by the FDA for treatment,” Toe said. “The medication is used to slow the progression of the disease, but it is not a cure.”
By the late stages of the disease, most families cannot to care for patients at home, he said. They are often bedridden and need skilled nursing care.
“I’d like to do something for the memory of my aunts,” said Scruggs, who is a board member for the Arizona chapter. “I want to help people get through their bad time and know that there are other people that support them.”
Families struggle immensely as they care for those diagnosed with Huntington’s, she said.
Gwen, who first showed symptoms in 1958, died in her early 40s, Scruggs said.
“They didn’t know much about Huntington’s then or how to treat it,” she said. “They put her in a mental institution.”
Shock therapy was part of the treatment Gwen received in the institution, Scruggs said. She died in 1977, a week before Scruggs was born.
Sue lived to be older and Scruggs remembers visiting her aunt as a young child in the hospital.
“I remember I didn’t like to go see her,” remembered Scruggs about her aunt Sue when she was younger. “She couldn’t walk or talk. The hospital she was in wasn’t very good.”
After living with the disease for nearly 25 years, Sue was diagnosed with breast cancer, she said. But because of the advanced stage of her Huntington’s disease, Sue didn’t receive treatment.
“You slowly see the person disappear,” Scruggs said. “She was friendly and nice. She used to sing songs to us on her guitar. It was really hard to see her get bed sores.”
Both of Scruggs’ aunts had children, children they couldn’t raise due to the incapacitating nature of the disease.
“All of my cousins got split up and put into foster homes,” Scruggs said.
It wasn’t until years later that Scruggs was able to reconnect with the Guthrie side of her family.
And while some have chosen to be tested, others have not, Scruggs said. So far, the only family trait they’ve inherited from Woody is his musical talent.
To register for the walk, visit http://www.firstgiving.com/hdsa-scr/thwphoenix. The walk will be held at Kiwanis Park, 6111 South All-America Way, Tempe. Registration begins at 9 a.m., the 3/4-mile walk begins at 10 a.m.
It will be followed by family activities including face painting, free massages, live entertainment, dance performances, raffle prizes and more. All funds will go toward the Huntington’s Disease Society of America to help support research, clinical trials and support groups.
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