Penfield woman says 'broken' health care system failed her daughter

Feb 20, 2020

Emilee, left, and Linda Mazur of Penfield.
Credit Provided by Linda Mazur

Linda Mazur was stunned when she and her daughter went shopping and she saw in the dressing room how thin she was.

It was 2007, and Emilee Mazur was 24 years old. It was the first time her mother realized her daughter had anorexia nervosa.

"Emilee was the last person you would think this would have happened to," said Linda. "She was smart, bright, social, athletic, compassionate friend."

But anorexia doesn't discriminate.

In Emilee's case, the condition was triggered by a digestive disorder that started when she was in high school, which made it hard for her to keep food in her stomach.

"What started as disordered eating from a medical condition ended up really turning into an eating disorder," Linda explained.

Linda believes the stresses of school and a long-distance relationship contributed to the onset pf her daughter's anorexia when she was in college.

After struggling with the illness for years, Emilee was determined to get help. In 2010, she took medical leave from her job as a pharmacist and entered an inpatient treatment program in Utah. But she wasn't there long.

"After six days and gaining 2 pounds, the insurance company said they wouldn't pay for her treatment any longer, that she wasn't 'sick enough' to stay in that level of care."

And Linda and her husband, Jack, couldn't afford to pay out of pocket. The cost of the program was $30,000 a month.

Emilee's insurance provider also denied a request to enroll her in an out-patient treatment program in Rochester, and eventually, her symptoms escalated.

"There was a time," said Linda, "when Emilee was very distraught and she had lost her job and the eating disorder affected her ability to work and she had stepped in front of a car and was hit by a car."

Emilee was hospitalized with what luckily turned out to be minor injuries. 

Linda and Jack thought it might be a blessing in disguise.

"We thought now, now, they will understand; they will make sure she gets the help she needs," she said.

But Linda said the psychiatrist who was treating Emilee said she been hospitalized because she attempted suicide, not because she had an eating disorder, and if she wanted help for an eating disorder, she had to ask for it herself.

"And we were flabbergasted," she said, "we begged, we cried, we did everything that we could think of to get help and the system let her down and it let us down and her fate was tragic because of it."

Mary Tantillo, director of the Western New York Comprehensive Care Center for Eating Disorders said the Mazurs' experience was not unusual.

"Sadly, what Linda and Jack went through was more common that you would like."

The center is a hub for eating disorder services such as care management, support groups, peer mentoring, and education.

Because of a patient privacy law passed by Congress in 1996, Tantillo said families like the Mazurs are limited in their ability to help their adult children get treatment against their will. 

And patients with eating disorders will often act against their own self-interest. 

"People do not have a fully informed way of dealing with the illness when they're acutely ill because the illness takes that way from people," Tantillo explained. "Their brains aren't working the way they normally would if they were nourished properly, if they weren't having electrolyte problems because of purging, for example."

The Mazurs were unable to intervene on Emilee's behalf when she periodically denied them access to information about her medical care.

There were a couple of times when Linda said the stars aligned and they were able to admit Emilee into an in-patient treatment program, but her treatment was always cut short.

After a three-month stay at a Denver facility -- the longest Emilee was ever admitted to a program -- she discharged herself against the protests of her family.

Whatever ground she gained by being in treatment eventually disappeared, and the eating disorder would take over again. In 2016, when Emilee Mazur's internal organs could no longer function, she died. She was 35 years old. 

"Emilee, at the end, said she wanted her story told and kind of gave us permission to go out there and share," Linda said tearfully.

Part of what the Mazurs want people to know is that the health care system, which was supposed to be able to save their daughter, is broken. They wrote about the family's experience in a book, "Emilee: The Story of a Girl and Her Family Hijacked by Anorexia."

The Comprehensive Care Center for Eating Disorders works to educate and train medical professionals about the complex social, biological, and psychological components of eating disorders.

Tantillo said well-meaning health practitioners want to help patients like Emilee but they often lack even basic training.

"What is really kind of mind-blowing is that I have parents who I could put on the phone right now, they would be more educated than the majority of providers I've taught over the years."

Tantillo doesn't blame the practitioners. She blames medical schools for not offering better and more comprehensive education.

Another hurdle that people with eating disorders and their advocates face is uncertain funding for programs and services.

Tantillo said the center gets all of its operating budget from New York state, and she and others lobby each year to keep the center going.

In a tragic irony, the center had temporarily lost most of its funding in 2010, when Linda Mazur said Emilee might have had a chance to overcome her eating disorder.

"That's when Emilee could have benefited from those services," said Linda. "That was when she had asked for help herself and was really gung-ho about getting better."

Now, in their daughter's memory, Linda and Jack Mazur serve on the center's community advisory board, and Linda volunteers as a caring companion for eating disorder patients at Strong Memorial Hospital.

"We can't bring Emilee back," she said, "but we can try to help others from the same fate."

Several events are planned in Rochester for Eating Disorders Awareness Week, including a screening of the film "Going Sane" at the Little Theatre at 2 p.m. Sunday, Feb. 23. A panel discussion will follow that.