Never Giving Up

All her life, Patricia has been a healthy, self-described, “independent woman.” For more than two decades, she lived in California with her daughter and worked as an administrative assistant. But in 2001, Patricia left the West Coast to move back to North Carolina — home to the rest of her family — to care for her disabled son, who tragically died in 2003.

Despite the heartbreak of losing her son, Patricia continued to work and volunteer at a local hospice center. That all changed in April 2017 when she began experiencing unusual symptoms.

“I couldn’t walk,” Patricia said. “I lost the use of my hands and feet and had double vision.”

Her ophthalmologist ran a series of tests and within minutes, he said the two words that would change her life: myasthenia gravis (MG).

“I had no idea what it was,” Patricia said. “My doctors were baffled.”

Patricia’s case was rare. Typically, MG affects women in their 30s and 40s, not their 60s. Patricia spent much of the year in the hospital with visits lasting weeks at a time.

“I went from being independent to dependent,” she said. “It was a pretty rough year.”

Because her MG symptoms made it impossible for Patricia to drive, her brother often drove six hours to Charlotte so he could take her to her doctor’s appointments. She had a home healthcare worker, too, but they only worked a few hours a week. The cost of full-time care was too expensive.

“Since I was on my own and homebound, I had to improvise,” Patricia said. “I would have been in a rest home if it hadn’t been for my family.”

Patricia looked online for financial assistance and found The Assistance Fund’s (TAF’s) Myasthenia Gravis Financial Assistance Program, which covers out-of-pocket expenses such as copayments, health insurance premiums, and incidental medical expenses related to MG.

“One thing I know is I am never going to give up.”

“The Assistance Fund has been a lifesaver,” Patricia said. “I am so blessed.”

Thanks to many months of treatment, Patricia’s doctor believes her MG is now stabilized. As her mobility and independence return, Patricia is driving again and can enjoy time outside.

“I haven’t had double vision since June 2020,” she said. “Now, I am walking again.”

Her successful treatment has meant fewer trips to the doctor. Through it all, she said, she’s kept her faith.

“Some people take for granted things as simple as walking,” Patricia said. “One thing I know is I am never going to give up.”