Breathing New Life
John Muir once said, “Going to the mountains is going home.”
Rosona, who lives in King Canyon National Park near California’s Sierra Nevada mountains, would agree. But after decades of dealing with an undiagnosed condition and worsening symptoms that left her incapacitated, Rosona worried she may have to move.
“We work at a camp up here and it’s beautiful, but as I got sicker it’s become more difficult,” Rosona said. “The thought of leaving is impossible.”
Much of Rosona’s family lives on the east coast, meaning phone conversations take on extra importance. But her mysterious symptoms were making every breath difficult, keeping her from holding a conversation. Each year her symptoms worsened, leaving her unable to work at the camp and the Christian Conference Center where she volunteers. She sought out doctors throughout California, searching for a diagnosis. Different doctors put her on different treatments, each unsuccessful.
“I couldn’t get around at all,” Rosona said. “Just walking around my house, I struggled to breathe.”
After more than three decades of searching for answers, a doctor in 2018 suggested Rosona meet with a rheumatologist. From there, she was able to see a neuro-muscular specialist who diagnosed her with myasthenia gravis and prescribed a new treatment.
“You don’t want to be diagnosed with a rare disease, but after 30 years it was nice to have answers,” Rosona said. “It was a relief; I could start to figure out how to live with it.”
But when Rosona discovered the high out-of-pocket costs of the treatment, she knew she wouldn’t be able to afford it. A case worker advised Rosona to apply for assistance from The Assistance Fund’s (TAF’s) Myasthenia Gravis Financial Assistance Program.
“I got in and was approved right away,” Rosona said. “It was remarkable how easy it was to get signed up with TAF.”
With assistance from TAF, the gas for Rosona’s four-hour car ride to the nearest hospital is covered, giving her peace of mind. Rosona is moving about and breathing better for the first time in years. Over the past six months, her health has significantly improved.
This past holiday season, Rosona was thrilled to take her granddaughters to see The Nutcracker.
“I wouldn’t have been able to do that without my new treatment,” Rosona said. “It would have been too difficult. I feel like I can actually live my life.”
She’s optimistic, too, about what 2020 has in store. Rosona is already beginning to do more around the camp, a return to the way things used to be.
“Finding TAF has been the greatest gift,” Rosona said.
