Since being diagnosed with sarcoidosis in 1986, Dr. Bernadette Kutcher lost almost everything — her medical career appeared to be over before it began, her fiance backed out of their engagement, friends and family stayed away, and her ability to live what would be considered a normal life. Kutcher was beset by seizures, drastic personality shifts, even bouts of violent behavior while working through symptoms and treatments.

She’s still here.

“What drives me to keep up the fight, to find the courage, fortitude and drive — first and foremost, the Bible’s Proverbs 18:14: ‘Your will to live can sustain you when you are sick, but if you lose it, your last hope is gone,'” she said. “I have a strong will to live.”

For decades, the 68-year-old Hermitage, Pa., physician has been advocating for patients of the rare disorder that can attack multiple organs of the body. In Oct. 27, 2017, testimony before the Ohio Senate Health Committee, Kutcher told about being diagnosed during her third year of medical school:

“As many sarcoidosis patients, I was first told I had cancer and would die before graduating from medical school. After surgery to determine the correct diagnosis, my physician came into my hospital room carrying an armful of medical books because he was not sure how to treat me.

“Prior to my diagnosis, in one of our classes, we were taught the following lines about the disease: ‘Sarcoidosis is a granulomatous disease. Cause is unknown. No cure. It usually affects the eyes, lungs and skin. In the United States, it affects blacks more than whites. Sweden has the highest number of cases. Affects women more than men usually between the ages of 20 to 50. Treatment of choice is prednisone.’

“That was it! Thus explains why my physician came into my hospital room carrying an armful of medical books.”

Kutcher was hit with an even more rare offshoot called neurosarcoidosis, which disrupts the brain.

“As bad as the disease effects were, more agonizing were the hurtful actions and disrespect of the other residents and program director because they failed to comprehend and appreciate the impact the disease was having on my body,” Kutcher told the Ohio Senate Health Committee while pleading for sarcoidosis awareness.

“Simply, they put me through hell. Instead of coming to me and asking what they could do to help, they questioned my integrity, my commitment to medicine and my value as a human being. Again, as stated above, limited education about sarcoidosis impacts how physicians treat those diagnosed with the disease — even their own colleagues.”

Since then, the disease has garnered more attention.

Dr. Lawrence Goldstein, a pulmonologist at Trumbull Regional Medical Center in Warren with a private practice in Boardman, said he probably sees about 15 cases of sarcoidosis a year, and his partners see about the same.

“It’s not super rare but it’s not super common either,” Goldstein said. “It’s usually found as an incidental finding on a chest X-ray.”

Symptoms usually are the same as most pulmonary diseases — shortness of breath and coughing.

“A lot of cases don’t need treatment,” he said. The steroid prednisone still is the first step. After that, the wide range of options include anti-inflammatories, cortisone stimulators and autoimmune disease drugs.

For most people, sarcoidosis is a benign condition that isn’t much trouble. “But some people can have a severe, life-threatening course,” Goldstein said.

According to the Sarcoidosis Center at the Cleveland Clinic Respiratory Institute — where Kutcher was the inaugural speaker — the treatment team includes specialists in pulmonology, cardiology, electrophysiology, neurology, ophthalmology, dermatology and rheumatology.

National statistics place it at up to 40 cases out of every 100,000 people, with 10 to 17 of those case affecting black populations; eight to 10, white; and three to four, Asians and Hispanic people, Kutcher said. Worldwide, it’s in most prevalent in the Nordic countries.

Kutcher said she refuses to give up.

“There are days when I question, ‘What’s the use?'” she said. “I get down and flounder through the days at times. At the present time, fatigue, pain and shortness of breath are the three most challenging aspects of most days. Aloneness doesn’t get to me, but some days loneliness is hard to battle through.

“After becoming ill, I found writing and speaking, and have attempted to use both to continue being a doctor, but in a different kind of way,” she said. “More times than not, when a patient with sarcoid or a family member contacts me, I am having what I call a bad ‘sarcoid day,’ but if I’m able to offer any help, well, I am still being a physician as well as a better person.

“nd this gives me more strength and encouragement to keep up fighting my ‘war.'”

Perhaps what’s needed the most is “15 minutes of compassion,” she said.

“Initially, people are there with encouragement, casseroles, offers of assistance, prayers, but when the condition goes on, people drift backwards away. Maybe it’s burn out from helping, maybe simply not knowing how to help any longer, whatever the reason, I have heard this many many times.

“I still believe in picking up a phone and having a human voice conversation or an in-person meeting. True listening and hearing is so needed with then true and heartfelt validation. People complain that a person is having a pity party and can’t stop talking about his / her condition. But I think the problem is that down deep the person with the condition never feels validated. So that person keeps trying to get it.

“In the midst of all the negatives of my life, my will to live enables me to keep going and to not give up hope that a new and improved ‘normal’ life is yet to be for me. And my hope is always with God,” she said.