Gratitude for the Little Things
A typical day for Sheryl begins like many: Fixing breakfast, and catching up on the news and her correspondences. When her two rambunctious pugs aren’t attempting to run through the television, she and her son are able to go walking to the local dog park.
“I feel like I wake up and I’m normal,” Sheryl said.
It wasn’t always this way. For more than three decades, Sheryl suffered from unexplained weakness and fatigue. Any time her symptoms flared up, doctors were puzzled.
“I couldn’t swallow, my lungs were filling up, and I was mostly blind. I’d lost half my hearing and could barely speak,” Sheryl said. “It got very bad.”
Without answers, Sheryl was bedridden with severe muscle atrophy. But one knowledgeable doctor, and a new treatment, offered her hope. Suddenly, Sheryl’s condition and breathing improved. Better days turned into better weeks. And most important, doctors were finally able to put a name to the symptoms Sheryl was suffering from: myasthenia gravis (MG).
“The difference in function with appropriate treatment has been just amazing,” Sheryl said.
MG is a chronic autoimmune neuromuscular disorder involving the weakening of the muscular system. People living with MG experience fatigue, exhaustion, and double vision.
Following her diagnosis, Sheryl was able to begin and maintain a treatment regimen that proved to be successful. But several years of expensive copays along with a divorce put the cost of affording her life-changing treatment out of reach. Sheryl burned through her savings and faced the choice between treatment and bills.
“I had been on treatment for three years, but was getting pretty desperate,” Sheryl said. “I was at the point where I didn’t think I’d be alive. The copays had taken every penny I had.”
A fellow MG patient in an online community told Sheryl about The Assistance Fund’s (TAF’s) Myasthenia Gravis Financial Assistance Program.
“I filled out a form, and it was so easy,” Sheryl said. “I’m so unbelievably grateful for the entirety of help that TAF offers.”
Now Sheryl has a system for herself: daily alarms alerting her on when to take her medication, take naps, and go to doctor’s appointments. Like many people living with MG, she spends her days going to doctor’s appointments and receiving treatment.
“It’s important for me and my treatment to keep a regular schedule,” Sheryl said. “I’m so grateful to TAF when they even send me a reminder for reenrollment. I get an immediate response.”
Sheryl and her son live in central Oregon with her two pugs, who have been at her side through good times and bad. She recently returned from Washington, DC, where she joined hundreds of patients at Rare Disease Week.
“Between the coordinators and doctors I meet at infusion treatment, I can’t tell you how many people I’ve told about The Assistance Fund!” Sheryl said. “TAF has had such a huge effect on my life.”
And she has a message for those with MG, or any challenging health condition: Stay positive.
“Whenever you feel your worst, the one thing that will make you feel better is to do something for someone else.”
