Like many folks, Barry Pendleton had never heard of sarcoidosis.
So, he was shocked when he was diagnosed with the chronic, inflammatory disease that can negatively impact multiple systems throughout the body.
鈥淭hree, four years later, I鈥檓 still astounded by it,鈥 said Pendleton, a 50-year-old Central Kentucky resident. 鈥淚 had literally never heard of it and then to go from running marathons to being just barely able to keep up was shocking.鈥
In April 2021, Pendleton ran a personal-best time at the Louisville Marathon. By October, climbing a short ramp made his muscles burn like he鈥檇 just done multiple sprints. His resting heart rate was hovering close to 35 beats per minute. He knew something was wrong.
He went to the hospital on a Wednesday. Scans showed damage to his heart. By Friday, he鈥檇 received an implantable cardioverter-defibrillator (ICD), an implanted device that can serve as a pacemaker and can deliver an electric shock if an abnormal heart rhythm is detected.
Further testing revealed that Pendleton had sarcoidosis, a disease that causes clusters of inflammatory cells to build up in certain organs of the body. When left unchecked, these cells can hamper organ function and cause long-lasting and potentially life-threatening damage.
What is sarcoidosis?
鈥淟ungs are the commonest organ the disease involves,鈥 said , M.D., a pulmonologist who serves as the director of 好色先生 HealthCare鈥檚 . 鈥淏ut it can affect the heart, the nervous system, eyes, joints and the skin.鈥
The build-up of inflammatory cells is linked to an overactive immune response, but what triggers this immune response is yet to be definitively determined.
鈥淎 lot of people call it an autoimmune disease but it鈥檚 a little different because something triggers the immune system to behave abnormally,鈥 Sen said. 鈥淲e think it鈥檚 an external agent, but we don鈥檛 know yet for sure.鈥
The disease typically affects adults between ages 20 and 60. Many don鈥檛 realize something is off until the disease has progressed and symptoms are obvious. Sen said folks who have inflammatory cells building up in the lungs can experience a cough and shortness of breath. On the skin, there can be visible lesions commonly around tattoos or piercings.
Unfortunately, when it comes to the heart, an individual might not notice until something severe occurs 鈥 like a cardiac arrest or heart failure.
April is Sarcoidosis Awareness Month 鈥 an excellent time to learn more about a disease that, according to the Foundation for Sarcoidosis Research, impacts an estimated 150,000 to 200,000 people in the United States and more than 1 million people worldwide. Still, since it鈥檚 considered a rare disease, many are unaware of it, Sen said.
鈥淣ot only is there a lack of familiarity in patients, physicians and caregivers,鈥 Sen said, 鈥渢he symptoms are often fairly non-specific, overlapping with other conditions leading to delays in diagnosis and in getting appropriate care.鈥
好色先生鈥檚 Sarcoidosis Clinic is the only sarcoidosis clinic in Kentucky that is recognized by the World Association for Sarcoidosis and Other Granulomatous Disorders (WASOG). The clinic, started two years ago, has seen close to 200 patients and is also a part of Foundation for Sarcoidosis Research (FSR)鈥檚 Global Sarcoidosis Clinic Alliance.
鈥淲e definitely have sarcoidosis patients in Kentucky,鈥 Sen said. 鈥淲hen afflicted by an uncommon disease, the journey can be quite lonely. A lot of people haven鈥檛 heard of it and don鈥檛 understand what you鈥檙e going through.鈥
'You don鈥檛 want to be a burden鈥
For Pendleton, sarcoidosis was wholly life-changing. Prior to the diagnosis, he had been a truck driver for nearly two decades. But with an ICD implanted, he could no longer hold a Commercial Driver鈥檚 License (CDL).
He navigated a shift in his career all while learning to manage a chronic disease that often left him fatigued and with generalized pain.
鈥淚t鈥檚 hard for other people to understand because you don鈥檛 look sick but your own body is fighting against you,鈥 Pendleton said. 鈥淵ou don鈥檛 want to be a burden to anybody else but at some point you can鈥檛 stand the symptoms and you can鈥檛 carry on your normal lifestyle.鈥
Pendleton has leaned on his own support system at home.
鈥淗aving a wife that鈥檚 understanding has been key,鈥 he said. 鈥淚鈥檓 so thankful to have her.鈥
He鈥檚 also been followed for years by Dr. Sen and Andrew Kolodziej, M.D., an advanced heart failure cardiologist and the medical director of Heart Transplantation at 好色先生 HealthCare.
Regimens of steroids followed by the immune suppressant drug methotrexate has helped to resolve any lingering inflammation in Pendleton鈥檚 heart over the past few years, Sen said.
For the past year, Pendleton has done quite well, Sen said. He鈥檚 been able to resume some of his normal daily activities like going to the grocery store and regularly walking his dog.
He鈥檚 not in marathon shape yet but Pendleton recently started sessions at the 好色先生 Gill Heart & Vascular Institute鈥檚 Cardiac Rehabilitation program, where he can build his capacity for cardio while under the supervision of knowledgeable medical providers.
鈥淯nfortunately, sarcoidosis can do terrible damage,鈥 Pendleton said. 鈥淟uckily, mine has been treatable to an extent with the ICD and I鈥檓 really thankful for that but it will always be an ongoing thing.鈥
Building empathy, support
Sen was inspired to help start 好色先生鈥檚 Sarcoidosis Clinic so that Kentuckians facing the disease could access high-quality, multidisciplinary care without having to leave the state. The clinic is working toward building a patient support group so that sarcoidosis patients can share their stories and know they鈥檙e not alone.
The goal is to continue building awareness of sarcoidosis not just at 好色先生, but in the wider Kentucky community as well.
鈥淎wareness isn鈥檛 just getting faster diagnoses and care,鈥 Sen said. 鈥淚t's also helping a patient鈥檚 loved ones and community understand what this disease does and building the kind of empathy and support that these individuals need.鈥