Ohio nurse treats rare condition for years, then learns she has it

Katie Pantea, a pulmonology nurse in Wooster, spent more than a decade treating patients suffering from lung conditions, then came her own stunning diagnosis

WOOSTER, Ohio (WJW) -- Katie Pantea, a pulmonology nurse in Ohio, spent more than a decade treating patients with lung conditions. Then came her own stunning diagnosis.

Pantea, of Wooster, said her health suddenly began to spiral, and she suffered from constant headaches, as well as light and sound sensitivity. Diagnosed with migraines, Pantea, 35 at the time, pressed on until things got so bad she couldn't remember her drive home.  

"I had some numbness and tingling in my face and hands, down my legs, into my feet," she said. "I would have dizzy spells, slurred speech, facial drop, very confused, forgot to pay bills, forget where my 4-year-old daughter was sometimes."

A seizure at work witnessed by a doctor led to testing, through which Pantea learned she has the same rare disease she spent years treating in patients. It's called sarcoidosis, an inflammatory condition that causes the immune system to overreact and cells to form clusters of inflamed tissue in one or more organs.

"My sarcoidosis attacked my brain and spinal cord and my eyes," Pantea said. "So the symptoms I was having were very different than what we usually see presented to us here in my clinic."

Dr. Manuel Ribeiro, the director of the Sarcoidosis Center at the Cleveland Clinic, is one of Pantea's doctors.

"Really anybody can have it," said Ribeiro. "Patients will have a cough, especially a dry cough that lasts more than three months. Then there are some rare manifestations like in Katie's case, for example, because the disease can affect the nerve system, so brain, spinal cord. About 5% of patients with sarcoidosis can have neurosarcoidosis."

There are up to 200,000 cases in the U.S. per year, according to the Cleveland Clinic. Due to its rarity, it's a diagnosis that can be prolonged.

"It can take one to two years from symptom onset to the diagnosis, so a lot of people I think are out there with the disease and they don't even know," said Ribeiro.

Pantea, who works at the Cleveland Clinic in Wooster, now leads the sarcoidosis patient support group at the clinic. She encourages people from across the country to advocate for their health and assists people seeking out accurate medical information about their illness.

"I never thought when I went into nursing I would end up in pulmonary medicine, and it's abundantly clear," Pantea said. "I feel very fortunate that I worked elbow to elbow for a decade with someone who ultimately was able to figure out what was wrong with me."