Aug 17, 2021 10:00 AM

Read time: 5 minutes

Stephanie at HCI (right) with her best friend and Mrs. Utah 2021 pageant winner, Kelli McDonald
Stephanie at HCI (right) with her best friend and Mrs. Utah 2021 pageant winner, Kelli McDonald

Stephanie Griffin, a.k.a. Ms. US Continental, wants to “take the taboo out of poo.”

When Stephanie found out she has Lynch syndrome—which increases the risk for colon cancer and other cancers—she wanted a platform where she could raise awareness about the inherited condition and the importance of getting cancer screenings, with an emphasis on colonoscopies. Her idea: beauty pageants.

The subject of colonoscopy may seem out of place in the world of evening gowns and tiaras. But Stephanie firmly believes we should be comfortable talking about it anywhere. Having competed in pageants when she was younger, Stephanie knew it would give her a voice and an audience.

Stephanie was crowned Ms. US Continental in June 2021
Stephanie was crowned Ms. US Continental in June 2021

When Stephanie learned the statistics—an estimated 1 in 300 to 1 in 440 people have Lynch syndrome and most aren’t aware—she felt an urgency to tell the world. Lynch syndrome raises the risk for certain cancers—most commonly colorectal, uterine, ovarian, and stomach. Knowing you have the syndrome means you can take action and get screenings to prevent cancer or find it early, when it is easier to treat.

“There are people walking this earth blissfully unaware they have this condition that can potentially alter their lives in really profound ways,” says Stephanie. "I was like, I need to be talking to reporters, I need to be on social media, I need to be shouting from the rooftops about this.”

Until age 35, Stephanie was one of those blissfully unaware individuals. And she only found out she has Lynch syndrome by a fluke. A doctor had ordered genetic testing for Stephanie and her son, Blaze, to try and find the cause of a condition he has. The results didn't shed any light on Blaze’s health issue, but they revealed Stephanie has a genetic mutation that can cause Lynch syndrome.

“I was broadsided,” Stephanie says. She was vaguely aware certain family members had had cancer, but it was never in the front of her mind. She didn’t know those relatives well because the family became estranged when Stephanie was a child.

“The first thing I did was start Googling Lynch syndrome and the genetic mutation I had. Googling made me more upset. By the time I sat down to talk to a genetic counselor, I was pretty wound up.”

Having a mutation in one of the genes linked to Lynch syndrome— PMS2, EPCAM, MLH1, MSH2, or MSH6—means someone has this condition. Once this genetic diagnosis is made, a genetic counselor can help determine the best cancer screening plan based on a person's genetic status and family history of cancer together.

Stephanie shared that her mother died of brain cancer, her grandmother had colon cancer, two aunts had breast cancer, and another aunt had skin cancer. The genetic counselor came up with an individualized cancer screening plan that involved regular colonoscopies, endoscopies, skin cancer screening, breast MRIs, and visits to the gynecologist.

At one of those gynecologist visits, the doctor discovered a large mass in Stephanie’s uterus.

“[The mass] was benign, but as a preventive factor, they said we should go ahead with a hysterectomy,” says Stephanie. “Then in 2020, I started having intense pain in my right ovary. We decided the ovary needed to come out also since I have a heightened risk for ovarian cancer.”

Stephanie feels like she has been recovering from one surgery to the next for the past several years.

Stephanie gets blood drawn at HCI
Stephanie gets blood drawn at HCI

“It can be a little exhausting,” she says. “It’s taken a toll on my body. But I’ve gotten to the point where I accept that this is what needs to be done. I have a special needs child, so I need to be here on this earth for as long as I can. I have to stay ahead of this condition and remain healthy."

Because Lynch syndrome is inherited, genetic counselors recommend telling family members so they can get tested for it if they choose. This was easier said than done for Stephanie—not only did she have to find her estranged relatives, but she had to break difficult news to people she hadn’t spoken with in decades.

“If you can imagine the most awkward encounter you’ve ever had in your life and multiply it times 10, that’s what those conversations were like,” says Stephanie. “I managed to track down my aunt’s phone number. I called her and said, ‘Hi, I’m your long-lost niece and I have some important information to impart on you.’”

Most family members took the news fairly well, Stephanie says. But after learning Lynch syndrome likely means frequent colonoscopies, a relative said they would never get the procedure because it is too humiliating. Stephanie was stunned at the response.

“If you know there’s a 25-minute procedure that could potentially save your life, why would you not do it? That’s where my tagline ‘Let’s Take the Taboo out of Poo’ comes in.”

Taking the stigma away from colonoscopy and urging people to get the screening has been a major part of Stephanie’s message. While on stage during the Ms. US Continental pageant, she even convinced a colonoscopy-reluctant judge to schedule an appointment.

Stephanie also urges people to learn their family health history and get genetic testing if the family has a pattern of cancer. If you know you’re at higher risk for the disease, she says, you can arm yourself with the tools to stay ahead of it.

“I may never get cancer because I know I have Lynch syndrome and I know what preventive measures to take,” she says. “Knowledge really is power. I’ve heard it said a million times, but it didn’t really have meaning to me until now. Knowledge is power until there’s a cure.”

patient stories gastrointestinal cancer colorectal cancer colonoscopy genetics cancer screening

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