Sandy and Jill Wiggins enjoying a ski trip in Steamboat Springs, Colorado. (Contributed by Sandy Wiggins)
Author: Lisa Crutchfield
J. Saunders “Sandy” Wiggins has always enjoyed adrenaline-fueled activities, from downhill skiing to racing sports cars.
Several years ago, after he began lacking the energy that had always fueled his supercharged lifestyle, he sought help from VCU Health Pauley Heart Center physicians who diagnosed him with cardiac sarcoidosis – a rare inflammatory disorder that can affect multiple organs and requires expert care.
Today Wiggins remains as active as ever thanks to the care he receives at VCU Health’s Multidisciplinary Sarcoidosis Clinic, the only one in Virginia to achieve the Center of Excellence status given by the Foundation for Sarcoidosis Research and World Association for Sarcoidosis and Other Granulomatous Disorders.
“There was a time when I really did slow down,” Wiggins, an amateur sports car racer, says. “But at VCU I found a whole team of awesome folks who got me back on the right track. I feel great now, and I do everything I want to do.”
Sandy Wiggins celebrating a second place finish in a sports car race at Virginia International Raceway. (Contributed by Sandy Wiggins)
The sarcoidosis clinic concentrates providers from numerous specialties to both treat patients who are living with the inflammatory disease as well as educate other physicians about the condition that is usually discovered in the lungs, but can involve the heart, eyes, liver, joints and skin. About 25% of patients experience cardiac sarcoidosis, which can cause immune cells to congregate in the heart muscle and create clusters of inflammation called granulomas.
While a variety of treatment options exist for patients who are diagnosed with cardiac sarcoidosis, if the condition goes undetected scar tissue may develop in the heart, leading to life-threatening arrhythmias or heart failure.
“Sarcoidosis is a challenging disease, affecting so many organs including the heart,” says Jordana Kron, MD, professor of cardiac electrophysiology in the Department of Internal Medicine and co-founder of VCU Health’s sarcoidosis clinic. “Every person with sarcoidosis should be screened for cardiac involvement.”
A patient-centered spirit of discovery
Many of the research findings that help Kron and other physicians advance patient care in the sarcoidosis clinic come from donor-funded studies conducted at VCU. In 2019, Kron, who was also a translational science scholar at the VCU C. Kenneth and Dianne Wright Center for Clinical and Translational Research, received a Pauley Pilot Grant to study a new treatment protocol. What she learned in that early-stage research later paved the way for a $1 million American Heart Association Collaborative Sciences Award and a two-year award from the National Institutes of Health.
Philanthropic support enabled Kron and her colleagues to design a randomized controlled clinical trial that includes African-Americans and women – the two populations most affected by the disease. Through this trial, they found that inflammatory biomarkers improved when cardiac sarcoidosis patients were treated with a medication that blocks Interleukin-1, a protein that signals the presence of inflammation in the body. This is a first step toward a deep understanding of the mechanisms underlying cardiac sarcoidosis.
Kron’s research continues to focus on developing new ways to manage sarcoidosis, particularly without using steroids, which can cause hypertension, weight gain and other side effects that could be especially dangerous for cardiac patients.
“Our goal is to help patients feel as good as possible, live their lives and be with their families,” Kron says.
Family is how Wiggins describes his care team, underscoring the empathy and availability he's been continually shown.
“They’re interested in me as a person, not just as a patient,” says Wiggins, who fits in as many ski vacations as possible when he’s not working. “My family and I appreciate all that VCU brings to Richmond and the surrounding areas. How lucky are we to have those experts in our backyard?”
He adds that he feels an obligation to contribute to the place that gave him his life back.
"By making a gift to the Pauley Heart Center and identifying a particular research project or disease to support, you have the ability to play a small part in giving patients a second chapter of their lives,” Wiggins says. “Second chapters are pretty cool, and I'm jazzed to be a part of it."
Learn more about VCU Health's Multidisciplinary Sarcoidosis Clinic
Read more stories from the Pauley Heart Center blog
FAQs
It's important to talk with heart doctors (cardiologists) who understand the condition if you have symptoms such as palpitations, chest pain, shortness of breath or a feeling that you're about to pass out. There is no known cure for sarcoidosis, though the condition can clear up on its own.
What is the life expectancy of someone with cardiac sarcoidosis? ›
How long can you live with cardiac sarcoidosis? Studies have found that 83% or 93% of people living with cardiac sarcoidosis were alive 10 years later. Survival rates were 80% or higher for one and five years after a heart transplant.
What is the most common cardiac complication of sarcoidosis? ›
Complete heart block is the most common finding in patients with clinically evident cardiac sarcoidosis and is reported in 23–30% of patients.
What is the mortality of cardiac sarcoidosis? ›
An initial dose of 30 to 40 mg is commonly used. A Finnish nationwide study on 110 patients, of whom 93% received immunosuppressive therapy, showed that cardiac transplant-free survival at 1, 5, and 10 years was 97%, 90%, and 83%, respectively.
Is cardiac sarcoidosis a disability? ›
Is Sarcoidosis Considered a Disability? The SSA does not include sarcoidosis in its listing of impairments. However, if you have another medical condition that was caused by sarcoidoses – such as COPD or heart failure – then you may qualify for Social Security disability benefits.
Is cardiac sarcoidosis reversible? ›
Early diagnosis and treatment of CS with corticosteroids, in the absence of myocardial fibrosis, could potentially revert conduction disease.
Is cardiac sarcoidosis a terminal illness? ›
Symptoms of cardiac sarcoidosis can be life-threatening.
What is the best diet for sarcoidosis? ›
Eat Healthfully
A balanced diet includes a variety of nutritious foods, such as dairy products, lean meats and other protein sources, vegetables, fruit, and whole grains. Limit refined foods, like sugar and white pasta, as well as those that are high in fat.
What is the bad prognosis in sarcoidosis? ›
Overall, the disease mortality is about 5 percent. Those cases which warrant additional concerns are those involving the heart and those that cause severe scarring in the lungs, which can cause respiratory failure.
What is the ejection fraction of cardiac sarcoidosis patients? ›
Current guidelines recommend placing an implantable cardiac defibrillator for patients with cardiac sarcoidosis and a severely impaired left ventricular ejection fraction (LVEF) of ≤35%. In this study, we determined the association between mild or moderate LVEF impairment and fatal ventricular arrhythmic event (FVAE).
Call 911 anytime you think you may need emergency care. For example, call if: You have severe trouble breathing. You passed out (lost consciousness).
What is the most common complication of sarcoidosis? ›
The most severe and frequent complication of sarcoidosis is the occurrence of pulmonary fibrosis. This is usually associated with chronic dyspnea and frank impairment of pulmonary function.
How long do you live with cardiac sarcoidosis? ›
A total of 45 (61.6%) patients underwent cardiac PET scan and/or MRI, with 41 (91.1%) having a positive study. During follow-up, 10 patients (13.7%) either underwent transplant (n = 3) or died (n = 7) from sarcoidosis. Kaplan-Meier survival curves revealed 5- and 10-year survival rates of 95.5% and 93.4%, respectively.
What is the end stage of sarcoidosis? ›
Stage IV (Endstage): Pulmonary fibrosis or scar-like tissue found on a chest X-ray. Chest X-ray usually demonstrates a honeycomb-like appearance in the lungs. Due to this scar-like tissue or honeycomb-like appearance, patients may have difficulty breathing. It is permanent damage.
What is the cause of death of sarcoidosis patients? ›
The major causes of death from sarcoidosis include respiratory, cardiac, neurologic, and hepatic involvement (8). Cardiac involvement represents a major cause of death in patients with active sarcoidosis, with one autopsy study identifying cardiac involvement as the cause of death in 14 of 28 patients (10).
What are the long-term effects of cardiac sarcoidosis? ›
In cardiac sarcoidosis, tiny collections of immune cells form granulomas in the heart tissue and can interfere with normal functioning. This can result in heart rhythm abnormalities, also known as arrhythmias, such as ventricular tachycardia or heart block. It can also lead to cardiomyopathy or heart failure.
Does sarcoidosis go away completely? ›
There is no cure for sarcoidosis. The goal of treatment for sarcoidosis is remission, which means you still have the condition, but it does not cause you problems. You may not need treatment, and sometimes the condition goes away on its own.
Is sarcoidosis a permanent condition? ›
For most people, it's a temporary condition that goes away on its own or with treatment. For some, it's a chronic illness that causes permanent damage. About two-thirds of people diagnosed with sarcoidosis will eventually be disease-free (sarcoidosis will go into remission) in two to three years.
Does sarcoidosis have a bad prognosis? ›
Several factors are associated with a better or worse prognosis of sarcoidosis, as they are indicative of the severity of the disease. Risk factors for a poorer prognosis include: Slow progression of the disease. Involvement of lungs, heart, and nervous tissue.
Sandy and Jill Wiggins enjoying a ski trip in Steamboat Springs, Colorado. (Contributed by Sandy Wiggins) 
