There’s no worse feeling than being unable to breathe.

That, Deborah Rice knows from experience. Diagnosed with asthma at 18, Rice has spent countless hours in emergency rooms as she struggled for a breath, feeling the tiny airways in her chest growing tighter. Her trusty inhaler is a constant companion.

In summer 1999, while Rice lived in Columbia, South Carolina, she experienced an unforgettable attack: Somehow, deep inside, Rice felt this time was different. “I told my aunt, ‘This air is really thick,’” she said.

“I remembered using my inhaler and it not working,” added Rice, an accountant at Alabama Power Corporate Headquarters in Birmingham. “I was having shortness of breath, but it was not what I was used to, to the point where I thought, ‘This isn’t asthma.’ I ended up in the emergency room.”

A wall in Rice’s home captures her fight against sarcoidosis. (Deborah Rice)

That began a new quest for Rice. Pressing harder than ever, she saw numerous specialists while searching for answers about her physical condition. About 13 years after the asthma diagnosis, Rice’s then-pulmonologist Dr. Joseph Love in Columbia, South Carolina, took chest X-rays. From there, he took a chest biopsy that confirmed that Rice had pulmonary sarcoidosis (pronounced SAR-COY-DOE-SIS) of the lungs.

Love commented, “I wondered if it was not asthma, but sarcoidosis all along, because normally adults aren’t diagnosed with asthma.”

Sarcoidosis Awareness Month in April shines the spotlight on this rare, inflammatory disease that causes the body’s immune cells to form clumps, or “granulomas,” in any part of the body and/or skin. The granulomas can cause scarring, which changes the structure of the organ and affect how it functions. In the lungs, these inflammatory clumps of cells can cause breathing problems and even death.

Alabama Power employee advocates for sarcoidosis patients from Alabama News Center on Vimeo.

The hard truths of sarcoidosis

Mary McGowan, CEO of the Foundation for Sarcoidosis Research in Chicago, Illinois, was not surprised when she learned that Rice spent years searching for the reason behind her breathing problems. Difficulties in properly diagnosing the condition only heightens the need for more public awareness of sarcoidosis and increased testing for the disease, she said.

Mary McGowan, CEO – Foundation for Sarcoidosis Research (FSR)

“Sarcoidosis is sometimes not on the radar,” McGowan pointed out. “About 175,000 to 200,000 Americans suffer from the disease. About 1.2 million people worldwide have sarcoidosis. About 80 percent of these people have some lung involvement. The problem in diagnosing this health condition is that symptoms can mimic so many other diseases.”

Extreme fatigue is usually one of a patient’s first symptoms, as even taking a flight of stairs becomes challenging.

“Many people left untreated can have cardiac sarcoidosis, which is incredibly difficult to diagnose,” McGowan added. “We’ve heard about cases in which patients were diagnosed after an autopsy. Oftentimes, the patients were diagnosed as having a heart issue, and it’s only during the autopsies that doctors find granulomas of the heart. That is the evidence that the patient has gone untreated for this severe condition, and it cost them their life.”

Fighting with advocacy and hope

Like many sarcoidosis patients, Rice suffers from chronic fatigue and nearly constant pain in her muscles and joints. She is adamant that the ailment won’t define her.

Rice enjoys walking to stay healthy and fit. (Deborah Rice)

“This is my life, 24/7. People with sarcoidosis all have different symptoms. I don’t like being put in a box,” Rice said, with determination rising in her voice. “Every case is not the same,”

That is one of the messages Rice is sharing as a community outreach leader for UAB Hospital and the Foundation for Sarcoidosis Research Global Sarcoidosis Clinic Alliance (FSR-GSCA). Tapped for this advocacy role in January 2023, Rice has met with other sarcoidosis patients. She has seen others’ symptoms, such as bone loss, weight gain and even mental health issues that arise from living with a chronic, rare disease.

The FSR-GSCA includes clinics, hospitals and medical providers committed to finding a cure and offering evidence-based, patient care for those with the disease. The UAB Multidisciplinary Sarcoidosis Clinic, where Rice receives medical treatment, is a founding member of the Global Sarcoidosis Clinic Alliance.

“One of the things I want this position to help with is just talking about sarcoidosis,” Rice said. “Getting people to start having conversations, getting doctors to start thinking outside the box, coming together as a community so that we can educate and get more medicines and treatments for sarcoidosis patients is so important.

“Since being diagnosed, advocating has become very important to me,” she added. “Becoming a community outreach leader is allowing me to work with individuals who are fighting the same battle, sharing my story in hopes of helping others. I am learning more about sarcoidosis to receive and give a better understanding of the disease.”

Rice has a brother-in-law with sarcoidosis, whose symptoms are vastly different. On her father’s side of the family, two close relatives have died of pulmonary sarcoidosis.

Rice tries not to let fears sway her. Long ago, she decided that sarcoidosis would not win. To try to improve her condition, Rice tried an anti-inflammatory diet, to no effect. Some days, she admitted, with a laugh, “I feel like I’ve been hit by a Mack truck.”

Still, she fights through the fatigue and pain.

“I’ve found that, in pushing myself, it has given me strength to go a little further,” Rice said. “I am an adamant walker. I will get out and walk, walk, walk. I’ve been adamant throughout this journey that I don’t want to give this thing more power than it already has. So, I will continue to push, I will continue to smile. You won’t know a bad day, because I’m not going to present that to you.

Rice looks to the future with hopes for a cure. (Deborah Rice)

“This has definitely been an interesting journey,” she said. “It is what it is. There’s never been a time when I said, ‘Oh, why did this happen to me? Why did I go through this?’ I continue to think that there is a purpose. I’m not sorry for what happens because, again, I see a different person – I see a stronger person. Life has definitely changed for me.”

That is why Rice wants to help others through their own journeys with sarcoidosis. In honor of National Sarcoidosis Awareness Month in April, her goal is to raise $20,000 toward research of the disease. She plans to organize a Sarcoidosis Walk in Birmingham for April 2024.

Shattering the myths of sarcoidosis

Dr. Joseph Barney is Rice’s longtime pulmonologist at the Kirklin Clinic of UAB in Birmingham.

During his 23-year medical career, Barney estimated he has treated about 4,000 to 5,000 patients who have sarcoidosis. His patient base at the UAB clinic is comprised of about 60-75% women and about 30-40% men. While African American women comprise the largest group of patients afflicted, Barney treats sarcoidosis patients of all races, genders and ages.

“Sarcoidosis a difficult disease to treat,” Barney said, “because the immune system can cause damage, most commonly affecting the lungs. We will give medicines to suppress the immune system. Patients exhibit shortness of breath, cough and joint pain, and will sometimes need oxygen. Sometimes, people can have heart problems.

Dr. Joseph Barney (UAB)

“We know that sarcoidosis patients who have the pulmonary disease generally have a shorter life span. There are some genes associated with sarcoidosis,” added Barney, an Alabama Board-certified physician who earned his medical degree at Mercer School of Medicine in Macon, Georgia, and completed internships and residencies at University of Alabama Hospital.

Barney usually sees two different age groups at diagnosis: usually people who are in their 20s and 30s, but sometimes patients who are in their 60s. “More often than not, people who are in their 60s have usually displayed symptoms but were undiagnosed,” he said.

Barney is among hundreds of physicians nationwide who are calling for increased diagnostics and treatments for sarcoidosis.

“It’s important to know there are a lot more people who have not been diagnosed, and for healthcare providers to know to think about sarcoidosis as a possible cause, particularly when treating people with respiratory conditions,” he said.

Barney noted that Rice has demonstrated continuing advocacy for vulnerable populations suffering from sarcoidosis, which helped set her leadership role with FSR-GSCA.

“Deborah has been an advocate and has helped organize support groups for sarcoidosis patients,” he said. “She’s had specialized training to serve as an ambassador for sarcoidosis advocacy.” The leadership team meets quarterly.

“We just want to get people to advocate for vulnerable populations to get the care they need,” Barney said. “We have some vulnerable patients at the new Cooper Green Mercy Health Services hospital in Birmingham, and we want to provide outreach and financial assistance to these populations.”

The public is invited to attend a Sarcoidosis Support Meeting at UAB Highlands Hospital on Saturday, April 22, at 10 a.m. A sarcoidosis specialist will speak.