“Maybe One of You … ”

“I don’t feel like I’m suffering,” says Stephanie Vogt (pronounced “vote”) of Battle Creek. “There are many things that I have done since I’ve tested positive which I would never have done otherwise. I’ve started acting, which I love. I had a supporting role in one of the local civic theaters and I actually had lines. And I’m taking guitar lessons. I’ve always wanted to do that.”

Vicky and Stephanie Vogt Photo: John Grap

Vogt’s life took on its new sense of urgency in August 2000, when she was 28. She learned at the University of Michigan Medical Genetics Clinic that she carries the mutant gene for Huntington’s disease, a progressive and fatal degeneration of the brain cells that inflicts memory and personality loss, extreme mood swings, and uncontrollable tremors and twitches.

Vogt inherited the gene from her father, who committed suicide when she was three. He had been diagnosed with manic-depression and schizophrenia, and overdosed on his medications. Years later, after Vogt resumed relations with her father’s side of the family — her parents divorced shortly before his death —she learned that she had seven relatives who suffered from Huntington’s. She began to wonder if her father had, too, and then she saw an episode of ER in which a man with the symptoms she now recognized so well was advised to consider a genetic test for the disease.

“I thought I could just go into my doctor’s office and get a blood test,” she says, “but she told me there was a process.” Vogt was referred to U-M, where she and her family worked with clinical geneticist Elizabeth Petty and genetic counselor Wendy Uhlmann.

“Wendy and Dr. Petty treated me like a person from the moment I walked in,” she says. “I never felt like I was just another patient. They wanted to make sure that I actually wanted to get tested once I found out all the factors. They were both very compassionate from the beginning. They knew that they were going to be dealing with information that could change someone’s life.”

And the lives of her family members. Stephanie’s positive test meant her father had had the gene, which increased the risk that her older sister Vicky carried it from 25 percent to 50 percent. Concerned about her insurability, and how her mother would react if both of them had Huntington’s, Vicky resisted being tested herself for almost four years.

Then she became engaged. She and her fiancé wanted to have children, so Vicky found herself back at the clinic she had first visited with her sister. Since then, Stephanie, Vicky and their mother had returned to Ann Arbor annually to tell their story to Petty’s medical students.

“Even with me being around all of this as long as I have, they didn’t want me to feel pressured,” Vicky says. “They even asked if I felt they were forcing me to do this. They are very neutral. They just want to be there for you in whatever way you need them to be there for you.”

Much to her surprise, Vicky was depressed and withdrawn for weeks after testing negative. “I figured I’d be on cloud nine,” she says. “Instead, I felt like it was almost unfair. Why Stephanie and not me?” At least, she says, she now knows that when the time comes, “I’ll be able to step up to the plate and be there for her, whether to make sure she’s in the right places to get the care she needs, or in my care if I have the ability to do that.”

It’s impossible to predict the age at which the disease will manifest itself, but “I know my family looks at me and symptom-searches,” says Stephanie. “I symptom-search myself.” Vicky worries that she’s already seen signs in her sister: increasing forgetfulness, dramatic mood swings, occasional shaking. Stephanie worries that she’ll be a burden. “That’s my biggest fear,” she says.

Their biggest hope is that a remedy will be found before it’s too late for her. The last two times they’ve spoken to students, their mother has ended their presentation by looking around the room and saying, “Maybe one of you, if you go into genetics, could be the person who finds a cure for this disease.”

—JM

Also:

“Maybe One of You … ”

Genetics Clinics at Michigan