For years, Beatrice V. (dx 2023) searched for answers, visiting an array of specialists who were unable to piece together her puzzling symptoms. “Over and over, I was told it was this and it was that,” she recalls.
“My extreme fatigue finally made me get serious about my own care,” Beatrice says. More tests followed, including an ANA test, a lung function test, and a biopsy of the rash on her back.
After eight years of uncertainty, Beatrice finally received her diagnosis: scleroderma. “It wasn’t a pretty pill to swallow—no pun intended,” she says.
Her social life was immediately impacted, as she had to start being cautious about crowded places, avoiding concerts, movie theaters, and even hugs from family members.
“With my now compromised immune system, any illness could become a serious one for me,” Beatrice explains. “I went through all the stages of grief, but the not knowing what the future held was the most traumatizing part.”
Despite the uncertainty, Beatrice focused on the things that brought her joy: “I will keep smelling the roses—maybe even put some in my hair— and doing all I can to care for myself.”
Determined to turn her diagnosis into a force for good, Beatrice decided she would no longer stay silent about her disease. “I want to get scleroderma out of its closet,” she says. “Maybe if more people knew about it, more research funding could be secured, and one day, we could find a cure. I will keep spreading the word to help those fighting this incurable disease.”
Thank you, Beatrice, for sharing your story and for your unwavering determination to make a difference.
