By Liz Torrey 

At 41 years old, Darlene Anita Scott was training for a marathon – her seventh – and wasn’t feeling like her normal, energetic self.  

“At first I thought I just need to get back into condition,” said Darlene, who is an assistant professor of English at Virginia State University. “With an academic schedule, my summers are off, so that’s when I usually get a little bit more energy. But that was not happening. I was sleeping a lot — it was a tired I didn’t seem to be able to sleep off— and when I ran, it didn’t seem like I was getting stronger.” 

At her annual appointment with her primary care physician in 2016, she mentioned her unusual fatigue. Darlene likes to keep busy. In addition to her full-time job and her long-distance running habit, she is also an artist, writer, and fitness instructor – so she expected her doctor to tell her to do less and rest more. Instead, her physician ordered some tests, which revealed that Darlene’s heart was enlarged. Darlene was then referred to a cardiologist, where further tests indicated she had heart failure.  

“They looked at me like I was crazy,” she said. “My heart was functioning at something like 20%. They were asking me if I got winded walking up stairs and I had just run 10 miles the day before.” 

“I said, ‘Why do you think I might have heart failure? Do you have any ideas?’ And he looked at me and said, ‘African Americans tend to have high blood pressure.’ Well – I wasn’t coming in there with high blood pressure, which I’ve never had. I was coming in there with heart failure.” 

On the recommendation of an uncle who is an internist, Darlene sought a second opinion at an out-of-state cardiology clinic. That cardiologist, she said, basically told her that she was doing great and to “just run a little slower.” 

She was excited to “get back to her life,” but Darlene’s family pushed her to continue her search for answers. Why was an otherwise healthy person with no family history of the disease diagnosed with heart failure? 

“My uncle said I should find somebody who is willing to listen to all of what I was describing – a doctor who is willing to look at me as an individual, and not as a patient,” Darlene said. “And Dr. Shah was definitely that kind of doctor.” 

Each person and heart are unique – that’s how we treat them  

Keyur Shah, M.D., is the chief of heart failure at the VCU Health Pauley Heart Center. Darlene made an appointment with him after a friend and fellow runner, who is also a Pauley employee, mentioned Darlene’s diagnosis to Shah. “From the very first day that we met,” Darlene said, “he just seemed like he wanted to know who I was – not who I was as a patient, but who I was broadly speaking. He said, ‘What I learn about you as a person will help me start to know what to ask and what to look for.’” 

Under Shah’s care, Darlene underwent a battery of tests and diagnostic imaging procedures, which first confirmed heart failure and ultimately revealed an underlying condition – cardiac sarcoidosis. 

The first time many of our patients hear about sarcoidosis is when they are being diagnosed with it, and that can be really scary. But it’s probably not as rare of a disease as we think it is. 

Jordana Kron, M.D., an electrophysiologist at VCU Health Pauley Heart Center 

Sarcoidosis is an inflammatory disease in which clusters of inflamed tissues, called granulomas, form throughout the body. The disease can affect multiple organs – most commonly the lungs, but also the heart, eyes, skin, and more. The most common symptoms include cough, shortness of breath, night sweats, joint pain, and fatigue. 

“There may be a large population of sarcoidosis patients who are underdiagnosed, because of the multi-system, non-specific symptoms they experience,” Shah said. “People just feel sluggish, like they’re sick and without energy. The disease can progress for a while before it’s diagnosed. Darlene probably found her disease a little earlier than other patients would have, because she’s essentially an elite athlete who started noticing deconditioning in her functional capacity.” 

Cardiac sarcoidosis causes heart tissue to scar, which can give rise to irregular heartbeats and weaken or stiffen the heart muscle, leading to heart failure.  

Darlene experienced both issues. In addition to her heart failure diagnosis, her Pauley doctors placed an implanted cardioverter-defibrillator (ICD) in her chest to combat dangerously fast heart rhythms. An ICD continuously monitors the heartbeat and delivers electric shocks as needed to restore a regular heartbeat. 

“We used to think involvement of the heart [in sarcoidosis] was pretty rare,” said Jordana Kron, M.D., an electrophysiologist at the Pauley Heart Center who monitors Darlene’s ICD and provides her heart rhythm care. “But as we’ve had better imaging available through MRI and PET scans, we’ve discovered that about 25% of people with sarcoidosis have some cardiac involvement. It’s really a very complicated disease because it requires so many different specialists to treat it. It’s a lot for a patient to manage.” 

Collaboration in real time is at the heart of sarcoidosis patient care 

A team of VCU Health specialists, including Kron, came together in 2015 to found VCU Health’s Multidisciplinary Sarcoidosis Clinic. The first of its kind in the mid-Atlantic, the clinic allows sarcoidosis patients to see multiple specialists during the same visit to VCU Medical Center, including heart rhythm specialists like Kron, heart failure specialists like Shah, plus experts in lung (pulmonology), brain (neurology), digestive system (gastroenterology), and inflammation (rheumatology). 

“We are the only hospital in Virginia that has a multidisciplinary sarcoidosis clinic,” said clinic co-founder and pulmonologist Aamer Syed, M.D. “We have so many different specialists who are a part of our sarcoid clinic. The collaboration is great from a physician standpoint, because we learn from each other, and it’s great on the patient side, because the patients receive coordinated, consolidated care.” 

“Plus,” Syed continued with a chuckle, “our patients seem to like when there are three different specialists in the clinic room, talking shop right in front of them. They get to see our collaboration in real time.” 

Today, the clinic sees about 2,500 patients annually, and about 70% of those patients are Black women.  

“The primary population affected by sarcoidosis is Black women, and Black patients also present with more severe disease,” Syed said. “We don’t know exactly what causes sarcoidosis, but we think it is caused by a trigger that is inhaled or ingested from the environment. Some have hypothesized that there may be a specific gene tied to sarcoidosis vulnerability. Others think sarcoidosis may be connected to health disparities.” 

Sarcoidosis is a very treatable disease when caught early. We think that many of the patients who present with severe disease get to that point for reasons related to health disparities: They either don’t or can’t access health care regularly or they do go to the doctor, but they don’t get the attention or the treatment they need.  

Aamer Syed, M.D., pulmonologist and co-founder of VCU Health’s Multidisciplinary Sarcoidosis Clinic 

Kron and her clinic colleagues are involved in a variety of clinical trials that are working to identify the possible causes of sarcoidosis and uncover the most effective treatments for the disease. In fact, a 2012 study led by Kron determined that ICDs like Darlene’s were a both safe and effective means of preventing sudden cardiac death in sarcoidosis patients. 

“If we’re going to study this disease, we need to study it in the patients that are most affected by it,” Kron said. “It’s really important that we are partnering with our patients in the communities we serve so that we can learn more about them, and about their disease.” 

“I participate in clinic trials because my doctors at VCU have compelled trust, and because I know the benefits of it for myself and for others,” Darlene added. “I’m not a unicorn. What happens when people like me are not seen in clinical trials, or in educational materials about sarcoidosis? It can be deadly.” 

Spreading awareness about sarcoidosis by sharing her story 

Since her diagnosis, Darlene has become a community health advocate and works with the American Heart Association, the WomenHeart Coalition for Women with Heart Disease, and the Foundation for Sarcoidosis Research to raise awareness of both heart disease and sarcoidosis. She co-hosts a quarterly sarcoidosis support group with VCU Health sarcoidosis clinic nurse Kelly Polly, and in February of this year, she was honored for her advocacy work by the AHA.  

“I think it’s important that we talk about what sarcoidosis is, and what heart disease is. It can be scary – I understand that; I was scared, too. I was scared I was going to die. But by being specific, we get to some clarity, even if the clarity that you have is not necessarily what you wanted to hear,” Darlene said.  

“The first time many of our patients hear about sarcoidosis is when they are being diagnosed with it, and that can be really scary,” Kron said. “But it’s probably not as rare of a disease as we think it is.” 

Darlene Anita Scott is a long-distance runner who was diagnosed with sarcoidosis in 2016. Since coming to VCU Health’s Multidisciplinary Sarcoidosis Clinic, the disease has gone into remission. Darlene has become an community health advocate to spread more awareness about heart disease. (Kevin Morley, Enterprise Marketing and Communications)

In the sarcoidosis support groups and community education activities she leads, Darlene emphasizes the importance of “knowing your normal,” citing the example of her unusual fatigue as what ultimately led to her sarcoidosis diagnosis and successful treatment. 

“If you know what your ‘normal’ is, then you’ll know if something’s not quite normal, and then it needs to be investigated,” Darlene said. “Hopefully the investigation will show that it’s no big deal, but it might show that it is a big deal. But what we know about big deals is: If you confront them head on, they don’t have to stay big.” 

“Sarcoidosis is a very treatable disease when caught early,” Syed said. “We think that many of the patients who present with severe disease get to that point for reasons related to health disparities: They either don’t or can’t access health care regularly or they do go to the doctor, but they don’t get the attention or the treatment they need.”  

While there is no cure for sarcoidosis, the disease can be managed long-term with immunosuppressants. VCU Health’s team adjust medications and treatments to the lifestyle of their patients and what works best for bodies – ensuring each receive individualized care for their unique symptoms. 

“When we have an established diagnosis of sarcoidosis, my job is to manage the disease with immunosuppressants to try to get the inflammation under control,” said Huzaefah Syed, M.D., a rheumatologist in the Multidisciplinary Sarcoidosis Clinic who is part of Darlene’s care team. “I work closely with the other doctors in the clinic to come up with a proper regimen that is good for the patient, works for their lifestyle, and that they can tolerate. The majority of our patients with cardiac sarcoidosis do really well and are living normal lives, which is exactly what we want to see.” 

Darlene’s sarcoidosis is currently in remission thanks to her individualized medication regimen. Her heart failure persists due to the cardiac scarring, but she has been able to return to regular running and recently ran a virtual half marathon on her treadmill. 

“In general, at our sarcoidosis clinic, we really try to understand the whole person and what is meaningful to them,” Kron said. “For some people, it’s getting to important milestones. For others, it’s making sure they’re well enough to travel to see family. For Darlene, it’s running a half marathon. When we’re able to work with patients and see them do these things that are very important to them – that’s really why we created the clinic in the first place.” 

The VCU Health Multidisciplinary Sarcoidosis Clinic is the only treatment center of its kind in Virginia. Learn more about their team’s approach to care.

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