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.”
