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Logan mother fighting for her life after rare disease diagnosis

(KSL-TV)


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Estimated read time: 4-5 minutes

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SALT LAKE CITY — Jerry Griffiths sits lovingly by his wife's bedside at the Huntsman Cancer Institute waiting for her to wake up. By now, the drill is all too common. Kristie has undergone cryotherapy to heal wounds in her stomach, one of the many painful and life-changing symptoms of her rare, devastating disease.

A love story

Their love story began when they met at an arcade in 1987, began dating and became best friends. They married four years later. That love is now being put to the test.

"Watching your best friend deteriorate, three years ago we were camping, hiking, exercising," said Jerry, who lives with Kristie and their 17-year-old daughter, Hailey, in Logan. The couple also has a son, daughter-in-law and grandson.

They led active lifestyles and loved spending time together in the Utah backcountry, but no more. "All of that has been taken away because of this horrible disease," Jerry said.

Kristie had to quit the job she loved as a financial director, and life began to change drastically.

The diagnosis

Kristie has systemic sclerosis, a chronic autoimmune rheumatic disease that affects 35,000-70,000 people in the U.S. It causes fibrosis or scarring of the skin and internal organs. There is no cure.

"It's like a toothache under the skin all the time," said Dr. Tracy Frech, a rheumatologist at University Hospital. "It's always present and affects so much quality of life."

Frech has made it her mission to treat patients like Kristie, whose smallest blood vessels are attacked by the disease.

"Scar tissue results, which impairs the oxygen and nutrient delivery to the tissue, and both skin as well as internal organs can be affected," she said.

Eighty percent of the time, the disease affects women, usually in middle age.

For Kristie, it all began in October 2012 when her hands turned white and then blue. A battery of tests followed, and then the terrifying diagnosis.

"She was on her way to work and it kind of freaked her out, she had to call me and said, 'My hands turned white,'" Jerry said, pausing to push back tears. "At that time we had no idea what was going on."

The couple said they learned "not to Google," because the information about the disease is so bleak.

Hope for treatment

Frech is one of four doctors in the world heading a clinical trial for a new drug called Resunab. Earlier that morning she tested Kristie for that drug trial, which is entering Phase 2, or the middle stages, where doctors will use it on willing and eligible patients after promising preliminary results.

Researchers at the company that makes the drug, along with doctors at University Hospital, have high hopes it will work.

"That Resunab will activate and arm the immune system that actually shuts down chronic inflammation and shuts down fibrosis," said Dr. Barbara White, chief medical officer of Corbus Pharmaceuticals in Norwood, Massachusetts.

Doctors are also testing Resunab to see if it has a positive effect in cystic fibrosis patients.

Frech has close bonds with her patients, and has made finding better treatment and a cure for people like Kristie her life's mission.

"Kristie's spirit and her wonderful husband, and the love and support you felt talking to her, I get the privilege of feeling it almost every day with all the patients I see," Frech said.

An enduring love

Now, Jerry is her caretaker. He does all the cooking and cleaning around the house. While they admit it's frustrating for their daughter Hailey to see her mom's health deteriorate, and who wants her old mom back, they also said she is a tremendous support. "She's a backbone for Kristie," Jerry said.

"I have a very supportive family," said Kristie, amazingly awake just minutes after general anesthesia, and chalking it up to being used to it. "I think that's what keeps me going: my son, my daughter, and especially my husband."

As tough as it is for Jerry to see his wife suffer, their love endures, and has only grown stronger.

"As long as she wakes up and I get to see her face, the day can only get better from there," Jerry said.

Kristie turned and smiled in adoration at her husband of 24 years. "And hopefully, maybe one of these days they'll find a cure," she said.

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Utah
Heather Simonsen

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