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Brien Smith, MD, who says his own diagnosis of epilepsy influenced his decision to go into neurology, has never had a patient react negatively to news of his condition. "I'm in an unusual position -- there are very few people who have been on both sides of the fence." Photo by Adam Bird / AP Images for American Medical News

When doctors and patients have the same disease

Physicians who have the same diagnosis as their patients say their personal experiences enable them to connect with patients.

By Carolyne Krupa — Posted July 18, 2011

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Ever since he was a boy, Brien Smith, MD, recalls strange dreams that felt as if he were looking through a kaleidoscope.

As a teenager, there were episodes when he felt as though his brain short-circuited. Once, he was knocked down while playing high school football then got up and, disoriented, walked down the field in the wrong direction.

At 16, he collapsed in a parking lot during a grand mal seizure.

Now a neurologist, Dr. Smith says his experiences growing up with epilepsy help him relate to patients with the disorder.

"Seizures are something that, unless you have had them, you really can't connect with people who have them," said Dr. Smith, chief of neurology for Spectrum Health Medical Group in Grand Rapids, Mich.

"Seizures are something that, unless you have had them, you really can't connect with people who have them," said Dr. Smith, chief of neurology for Spectrum Health Medical Group in Grand Rapids, Mich.

Despite years, and sometimes decades, of study, most physicians spend their careers as outside observers of their patients' maladies. But in some cases, physicians have experienced the diseases or disorders they treat.

Being both physician and patient has its benefits when it comes to relating to patients, said William Shaffer, MD, a neurologist at North Colorado Medical Center in Greeley, Colo. Dr. Shaffer was diagnosed with multiple sclerosis during his second year of medical school and now specializes in treating patients with MS.

Having the disease helps him connect with patients.

"I'll ask people questions and they will say 'Wow, no one has ever asked me that before,' " he said. "Without doubt, it gives patients a level of comfort. It becomes just two people with MS just helping one another out."

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As a young physician, internist Bruce Rashbaum, MD, who is HIV-positive, focused on treating AIDS patients. At one point, he says took a break from practice. "I was really tired. I was sad. It was such a black time and I couldn't fix anyone." Photo courtesy of Dr. Rashbaum

Bruce Rashbaum, MD, an internist at Capital Medical Associates in Washington D.C., was in his first year of medical school when he was diagnosed HIV-positive. The news was devastating.

"Back then, it was a death sentence. Here I am beginning medical school, and I don't know if I'm going to make it to graduation," he said.

But Dr. Rashbaum finished medical school. He went into internal medicine to treat other patients with the virus. "It propelled me to go into HIV [treatment]," he said.

Dr. Smith and Dr. Shaffer said their diagnoses influenced their decision to go into neurology.

Medication helped Dr. Smith control his seizures for years. Then, during a trip to Seattle, he had a major seizure on the way to his hotel. Later tests revealed he had a brain tumor "not quite the size of a golf ball" in his left temporal lobe that had been missed in previous CT scans.

He underwent surgery to remove the tumor, but decided to give up his idea of becoming an emergency physician. "I had no way to guarantee that I would never have a seizure, even after having the surgery," he said. "I had to ask myself, 'Could I be a risk to myself or anyone else?' "

So he chose to go into neurology, where he could help other epilepsy patients and had no concerns of harming patients if his seizures returned.

Dr. Shaffer was diagnosed with MS after waking up and feeling a burning sensation in his feet. Within days, the burning turned to a strange numbness that spread through his legs and up his torso to his neck. When told he had MS, he initially thought he would have to give up becoming a physician.

"I thought I was done. I thought I was going to have to quit medical school," Dr. Shaffer said. But after a few days, he decided to turn his diagnosis into something positive and become a neurologist to help other patients like himself.

"So many people tried to talk me out of it," Dr. Shaffer said. "They said I would be living with it. Why would I want to go see it at work every day? For me that was the very reason why I should be doing it."

Practicing through disease

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Carolyn Runowicz, MD, a gynecologic oncologist in Florida, says being a breast cancer survivor has made her a better doctor. Her patients appreciate that personal connection. Photo courtesy of Dr. Runowicz

For Carolyn Runowicz, MD, a gynecologic oncologist and professor at Florida International University College of Medicine in Miami, her diagnosis came after she had begun her career in oncology. She was 41 and an attending physician directing a division of gynecologic oncology at Albert Einstein College of Medicine of Yeshiva University in New York City when she was diagnosed with breast cancer.

Like most patients, her initial reaction was fear. Even so, she was confident that since the tumor was only 9 millimeters, she wouldn't need chemotherapy. But she ended up having the treatment after doctors discovered the cancer had spread to at least three lymph nodes.

Despite weight loss and fatigue, Dr. Runowicz continued to see patients throughout her treatment.

"Work was my anchor, so I wanted to keep working," she said. "Having low blood counts would often require that I had to cancel office hours or surgery -- so that was also hard for my patients and staff."

Dr. Shaffer said he hasn't let his MS affect his practice. He has never taken time off because of it, and he is on medication to control symptoms such as fatigue and muscle spasms. Shortly after being diagnosed, Dr. Shaffer, who is left-handed, lost the use of his left hand. He adapted and learned to write with his right hand.

"I didn't want anything to keep me from ending my second year of medical school," he said. "I tell patients to focus on what you can do, not what you can't do."

A greater understanding

Dr. Shaffer said most of his patients either have MS or are suspected of having it. Most know he has the disease. He volunteers the information to those who don't know.

"Most of the time I don't have to tell them because I've been in the news two times in Colorado and have been in a lot of the papers here," he said. "It really does take on a whole different vibe in the room. Patients realize I know what they mean, because some of the things we experience are kind of off the wall."

Dr. Smith, who was named board chair of the Epilepsy Foundation in May, said he doesn't volunteer his medical history to patients, although some have heard of it through the foundation.

Many patients he sees have been unable to control their seizures through past treatments, and he doesn't want to give anyone false hope by telling them how his symptoms stopped following surgery.

"You have to be a little careful," he said. "One of the first things I want to do is be objective and realistic as possible about the treatment options."

Dr. Rashbaum doesn't advertise his HIV status either, but said most of his patients have heard through friends or news articles. As a young physician, the majority of his patients had HIV or AIDS. It was early in the epidemic and many died. His practice today is not focused on HIV, but he still has a number of patients with the virus.

He said his experiences influence how he interacts with all his patients, not just those with HIV.

"Patients appreciate that I share something with them -- I understand what it is like to have a medical condition," he said.

At the same time, he said it makes him strict with his patients. Treatments have improved so much. Patients with HIV and AIDS have a lot more options and are living much longer than 25 years ago.

"There is no room for error here. This is not black or white. This is a matter of life or death," he said. "It's 2011. People will live to be old men and women if they take their medications."

Dr. Runowicz said her experience with breast cancer has made her a stricter physician as well.

She treats patients who have gynecologic malignancies and breast cancer survivors coping with issues such as premature menopause and osteoporosis.

"It makes you more empathetic, but also tougher in that you can tell patients what they need to do and that you did it," she said. "I think they appreciate having an oncologist who has walked in their shoes."

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