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5 Things You Need to Know About Sarcoidosis – In Good Health – Rochester Area Healthcare Newspaper

5 Things You Need to Know About Sarcoidosis

Doctors stress teamwork is essential to finding new ways to treat the disease

By Ernst Lamothe Jr.

Physician Himabindu Vidula is the cardiovascular director of the UR Medicine Comprehensive Sarcoidosis and Amyloidosis Programs and a heart failure cardiologist. “I’ve seen patients as early as their mid-30s who needed a heart transplant because of sarcoidosis," she says.
Physician Himabindu Vidula is the cardiovascular director of the UR Medicine Comprehensive Sarcoidosis and Amyloidosis Programs and a heart failure cardiologist. “I’ve seen patients as early as their mid-30s who needed a heart transplant because of sarcoidosis,” she says.

As we have found with COVID-19, certain health ailments disproportionally affect certain ethnic groups. Sarcoidosis is an inflammatory disease that often attacks multiple organs, particularly the lungs and lymph nodes. Comedian Bernie Mac suffered from pulmonary sarcoidosis for 25 years and died from complications of the disease in 2008.

The best estimate today is that about five in 100,000 whites in the United States have sarcoidosis; however among Blacks, it occurs in about 40 out of 100,000 people, according to the National Institute of Health. It also affects those of northern European descent.

“Sarcoidosis is an example of your immune system going haywire and reacting to an unknown trigger leading to inflammation in the body,” said physician R. Matthew Kottmann, pulmonary director of the UR Medicine Comprehensive Sarcoidosis Program. “It is often diagnosed through chest X-rays and imaging by which you can detect enlarged lymph nodes. However, many findings are benign and don’t require any treatment. But sarcoidosis is something that cannot be ignored.”

Kottmann and another physician, Himabindu Vidula, cardiovascular director of the UR Medicine Comprehensive Sarcoidosis and Amyloidosis Programs and a heart failure cardiologist with the advanced heart failure program, talk about five aspects of sarcoidosis that people should know.

1. Overall Symptoms

In general, those who may suffer from sarcoidosis could find issues in their eyes, skin and lungs. Symptoms can begin with fatigue, swollen lymph nodes, joint pain and weight loss. It may progress to wheezing and chest pain in the lungs, rashes of the shins and ankles, or sores in the nose and cheeks along with blurred sight, sensitivity to light and severe eye redness.

“It can affect the organ system and present in many different ways. We have patients who had significant problems breathing and with their vision,” said Kottmann.

2. Heart problems can occur

Signs and symptoms related to cardiac sarcoidosis may include dizziness, irregular heartbeats, and swelling caused by fluid retention. “We know from autopsy studies that 25% of people with sarcoidosis in other organs will have sarcoidosis of the heart,” added Vidula. “It is essential to treat sarcoidosis because it can be fatal when your heart slows down or speeds up to an alarming rate. Your heart may also not pump normally, leading to heart failure.”

Physician R. Matthew Kottmann is pulmonary director of the UR Medicine Comprehensive Sarcoidosis Program. “Sarcoidosis is an example of your immune system going haywire and reacting to an unknown trigger leading to inflammation in the body,” he says.
Physician R. Matthew Kottmann is pulmonary director of the UR Medicine Comprehensive Sarcoidosis Program. “Sarcoidosis is an example of your immune system going haywire and reacting to an unknown trigger leading to inflammation in the body,” he says.

3. Age groups can vary

Sarcoidosis occurs most often between 20 and 40 years of age, but also presents in older adults. Kottmann said he tends to diagnose and treat people in middle age with the condition, yet all ages can be susceptible.

“I’ve seen patients as early as their mid-30s who needed a heart transplant because of sarcoidosis. While it does seem that the incidence of sarcoidosis has increased in the past couple of years, we are now equipped with better technology to diagnose and treat it,” said Vidula.

4. Variety causes impact in the diagnosis

As both doctors have mentioned, sarcoidosis can originate in various body parts, cause various symptoms and affect various age groups. Because of that variety, it is unlike many ailments.

“It is almost as if no two patients are created the same or have the same symptoms or the disease did not manifest itself in their bodies the same way,” said Kottmann. “It’s one of the reasons why the first approach is to determine what organs are being affected. It can also affect your joints where you have arthritic pain and can cause problems with your gastrointestinal tract or nervous system.”

5. Collaboration is key

At the University of Rochester Medical Center, 15 specialists gather to discuss management of complex cases. It is often the key to providing the correct diagnosis and management plan.

“We meet once a month and discuss the cases because each patient is different and we want to create the best treatment plan,” said Kottmann.

Vidula agrees especially with the University of Rochester Medical Center being the only heart transplant program in Upstate New York to provide care for severe cases of cardiac sarcoidosis.

“We are always researching new ways to treat sarcoidosis and that is why it is essential to all come together and work together as a team so we can come up with the best and most comprehensive approach for each patient,” said Vidula.