May is VHL Awareness Month

Von Hippel-Lindau is a rare genetic cancer

By: Maria Allard | Macomb Township Chronicle | Published May 11, 2022

 The Billcheck and Miller families enjoy time at the Walt Disney World Resort in Orlando, Florida. Left to right in the back row are Dax Billcheck, Emily Billcheck, Chad Miller and Haley Miller. Left to right in front are Tyler Billcheck, Layla Miller and Brooklyn Miller.

The Billcheck and Miller families enjoy time at the Walt Disney World Resort in Orlando, Florida. Left to right in the back row are Dax Billcheck, Emily Billcheck, Chad Miller and Haley Miller. Left to right in front are Tyler Billcheck, Layla Miller and Brooklyn Miller.

Photo provided by Haley Miller

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MACOMB TOWNSHIP — At press time, a “dining day” was scheduled May 11 at California Pizza Kitchen at The Mall at Partridge Creek in Clinton Township to raise awareness of von Hippel-Lindau.

VHL is a rare genetic cancer. People who have the disease may experience tumors and/or cysts in up to ten parts of the body, including the brain, eyes, kidney, and adrenal glands.

According to the VHL Alliance website at vhl.org, VHL disease is a hereditary condition, meaning that it can be passed from parents to their biological children. According to the website, the disease is caused by a change or mutation to the VHL gene located on chromosome 3 in every cell of a person’s body.

VHL is a disease one local family has lived with since the 1970s. Haley Miller and her sister, Emily Billcheck, carry the VHL gene and have the disease.

“(People) get tumors in our bodies in the primary areas, the eyes, our central nervous system and kidneys and pancreas areas,” said Miller, of Macomb Township. “A lot of times, it can turn into cancer, and that can be fatal.”

Those living with VHL are tested for tumors on a regular basis.

“We get scanned every year. We have MRIs on our spines, kidneys and pancreas,” Miller said. “I get my eyes checked every year. You try to keep ahead of it. A lot of people do chemotherapy or radiation and surgery.”

​​​The mission of the VHL Alliance is to improve the quality of life and health outcomes for VHL patients, families and caregivers with inclusive community building, connections to excellent education and treatment options, and advancements in medical research. May is VHL Awareness Month and a chance for those affected by the illness to spread awareness about it.

Miller said the FDA has approved a drug called Welireg for those with VHL.

“So far it’s really exciting,” said Miller, a 1997 Utica High School graduate. “It’s proven in trials to minimize tumor sizes and make them disappear. The drug may be the only choice for people who can’t get surgery.”

Miller has two daughters who attend Duncan Elementary School: Layla, in fifth grade, and Brooklyn, in first grade. The family of four includes Miller’s husband, Chad. Brooklyn also has VHL, and Miller said she is “doing good.”

“VHL doesn’t manifest itself until the teenage years,” Miller said. “She gets blood work yearly.”

Miller and Billcheck’s father, Martin Pinto, and his twin brother, Michael Pinto, both had VHL.

“My uncle was having some vision issues. He went to the doctor and was diagnosed in the 1970s,” Miller said. “Back in the ’70s, very little was known about von Hippel-Lindau.”

Miller and Billcheck were tested in the 1990s, when it was determined they both carried the gene. They both keep on top of the disease.

“It’s different for every single person,” Miller said.

In 1999, Miller had a bout with it when she started to have facial paralysis, and tumors were found in her left ear and brain. She underwent surgery to have them removed, and while many VHL patients endure many surgeries, that “was the only major surgery” for Miller.

“My uncle had to have a kidney transplant,” Miller said. “He was blind.”

Their dad died from the disease in January 2004, and their uncle died six months later after living with VHL. Both were in their 50s.

“All of my memories of him are from my childhood. Our parents are divorced, and I remember him being very present in our lives,” Billcheck said of her dad. “I know he cared and he was there. He enjoyed chess, and we’d watch Tiger baseball.”

Billcheck, of Clinton Township, also remembers bike riding with her dad when younger. But at one point, those outings stopped because of his health.

“He had more limitations physically as he aged, and balance and memory issues,” Billcheck said. “I loved him. I miss him every day. I think he felt a lot of guilt passing on VHL to us.”

Billcheck has undergone a few surgeries over the years related to VHL.

“I did have brain surgery when I was 34,” she said. One year later, she underwent kidney surgery. “I do have a tumor right now, we’re following. Other than that, I’m doing fairly well.”

Billcheck, who is married to husband Dax Billcheck, has one son, Tyler, who tested negative for VHL. Billcheck, a 2000 Utica High School graduate, is on the board of the VHL Alliance.

“People don’t know much about it, and raising awareness is always good,” she said. “The work we’re doing now is almost like we’re honoring my dad.”

Despite having VHL in the family, Miller and Billcheck remain optimistic.

“I still feel we are lucky and hoping for a cure one day,” Miller said.

A fundraiser in honor of Brooklyn Miller will be held from 2-4 p.m. June 26 at Painting with a Twist at 3320 S. Rochester Road in Rochester Hills. For details, visit the Painting with a Twist website at paintingwithatwist.com.

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