Doctor shortage affects local woman with rare disorder

Healthcare staffing shortage: A patient’s story

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The healthcare system has been facing staffing shortages, and a heavy workload. We’ve interviewed doctors who left jobs in primary care, simply because it was too much.

Now we’re hearing from the perspective of a patient, who losing her doctor. Her situation is unique, since she suffers from a rare genetic disorder. News10NBC’s Eriketa Cost spoke to her about her next steps in finding care.

“I really cannot express, the feeling of having a doctor that knows, that cares, that’s compassionate,” said Sue Kaszynski, who was diagnosed with a genetic disorder called Ehlers-Danlos syndrome.

Kaszynski said about a year ago, she finally found a doctor that felt right. She said before that, it took 68 years.

“I fell in love with her immediately,” she said.

The disorder attacks the connective tissues, including joints, skin and blood vessel walls. In her 40s, she started experiencing horrible symptoms; pain all over, that only got worse.

“My baseline pain is an 8, every day,” she said. “I dislocate joints on a regular basis, last night for example, my shoulder dislocated four times, and my hip once. Just by me moving in bed.”

That’s why finding the right primary care doctor, was so important for her.

“She normalized me for the first time in 68 years, I did not feel like I was a freak,” she said.

Now, Kaszynski’s doctor is leaving the practice. She said it’s possible her doctor is leaving a major healthcare employer, for reasons similar to others. We’ve interviewed local doctors like Dr. Michael Mendoza, Monroe County Health Commissioner, who said burnout is often to blame, and it’s only getting worse over time.

Kaszynski said she briefly looked around for other options, after learning the news. But options were slim. She was left with no choice but to go back to her former doctor.

“He’s a wonderful physician, I love him, we’re friends,” she said. “But he’s a family practice medicine, he’s not a specialist.”

She’ll meet with her old primary care doctor on January 3. It’s a back-up plan, that works for now, But Kaszynski says the doctor is retiring soon, and her search elsewhere has been slim.

“And I’m complex. A lot of doctors don’t want to deal with me.”

Her story is unique, and her challenges are too. But she hopes that sharing it, will shine a light on the current shortage of PCP’s, and the major healthcare struggle affecting lives, like hers.

“For her to make this decision to have to leave, I know wasn’t an easy one,” she said, of her former doctor. “And I’m sure it wasn’t for any of the other doctors, but they have lives and families and stuff they have to live and deal with.”