POWERGRAMS

HEALTH 15 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." Diagnosis can be difficult Mary McGowan, CEO of the Foundation for Sarcoidosis Research, 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. "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% 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. Dr. Joseph Barney, Rice's longtime pulmonologist at UAB's Kirklin Clinic in Birmingham, has treated about 4,000 to 5,000 patients with sarcoidosis. His patient base at the 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 is 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. "We know that sarcoidosis patients who have the pulmonary disease generally have a shorter life span. There are some genes associated with sarcoidosis," Barney added. Barney typically 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. Advocacy all important to finding a cure Barney is among hundreds of physicians nationwide who are calling for increased diagnostics and treatments for sarcoidosis. He 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," Barney said, noting that UAB provided Rice with specialized training to serve as an ambassador for sarcoidosis advocacy. "We just want to get people to advocate for vulnerable populations to get the care they need." Rice looks to the future with hope for a cure. "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. "The time is now to make a difference in people's lives," Rice said. "Awareness and support are long overdue, and to see this come to the forefront is huge." Walking outdoors helps Rice strengthen her resolve against sarcoidosis.

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