Tomisa Starr has spent most of her life battling health issues, but she has never let it stop her from living. In 1993, she was diagnosed with scleroderma, a rare autoimmune disease that causes the body to produce too much collagen, leading to hardening and thickening of the skin and organs. But her symptoms began in childhood when she experienced shortness of breath, fatigue and grey outs while running around with the other children. This led her to be diagnosed with a mild case of rheumatic fever because her pediatrician was unaware of scleroderma symptoms.
Unfortunately, it would take years before her seemingly unassuming symptoms and a slew of tests would finally lead to a diagnosis. “After I gave birth to my daughter my symptoms got worse. My skin was changing, I had horrible acid reflux, and I remember telling the doctors I couldn’t function because I was so exhausted,” said Starr.
Additionally, Starr’s scleroderma continued to attack other parts of her body. Tests confirmed that the walls of her organs were being replaced with scar tissue, which was leading to loss of function. In particular, the condition was affecting her heart, stomach and lung functions. Pulmonary function tests pointed toward restrictive lung disease, then progressive fibrotic interstitial lung disease. Put more simply, she was diagnosed with pulmonary fibrosis, a scarring of the lung tissue, that was steadily getting worse. In 2016 Starr was put on oxygen to address her worsening breathing and she was prescribed additional medication.
Though she tries to stay active because she knows that walking is good way to increase her lung function, the limitations of her disease make it difficult. She relies on a home concentrator to deliver her a steady stream of oxygen. This makes leaving the house difficult, because if she decided to go out, she must bring a large, cumbersome tank with her. “My condition essentially renders me homebound with little opportunity to get outside and participate in my community,” she stated in an article she wrote about her lung health struggles. “There are many days that I feel like a prisoner in my own home.”
Struggling with the Healthcare System
Throughout her journey, Starr encountered many obstacles to getting the care that she needed. Even though she lived in an urban area in northern California, the nearest scleroderma specialist was over 100 miles away. More concerning, her HMO insurance plan only allowed her to see providers within their network and the large financial burden of this disease didn’t allow her to seek an outside opinion even though she wasn’t getting answers or treatments she needed. “I discovered that my specific health needs and desired outcomes weren’t being considered in my care providers’ decisions. Over time, my biggest problem was that I wasn’t allowed to participate in decisions about my care,” Starr explained.
She took matters into her own hands by reaching out to specialists like Dr. Virgina Steen at Georgetown University who confirmed her diagnosis and contacted her insurance company on Starr’s behalf to make sure she received treatment. Her current rheumatologist and scleroderma specialist, who she pays out of pocket, help her take it day by day. “If you are not getting what you feel you need from your physician, keep advocating for yourself, I wish someone had told me that,” Starr said. “Particularly with scleroderma, I had to keep pushing because not many healthcare professionals understand it.”
Finding a Light in the Darkness
Despite battling the last 30 years with a disease that is known to “turn people to stone,” Tomisa never stopped advocating for herself. She has since resolved to dedicate herself to advocacy for chronic illness however she can. She leaned on her online scleroderma and pulmonary fibrosis communities, sharing her story through an online column. She became a co-leader for the Scleroderma Foundation support group in Sacramento and began working closely with the American Lung Association to advocate for the SOAR Act .
“There are times in everyone’s life when they feel vulnerable, but living with a chronic lung disease demands bravery amid fear, patience and determination. Sometimes simply living day to day requires us to expend more physical, mental, and emotional resources than we have,” Starr explained in her advocacy column.
“I’m not Superman, no matter how much 6-year-old me might have wished I was. But in my own small way, I can improve myself and help others along the way.”
Living with chronic lung disease, like scleroderma and pulmonary fibrosis, can be tough, but you don’t have to do it alone. There are resources to help guide you. Contact the Lung HelpLine to learn ways to advocate for your health and find support. Visit Lung.org/helpline or call 1-800-LUNGUSA.
Blog last updated: October 2, 2025
