Living with Scleroderma

Vivian’s Story

By July 19, 2021No Comments

Vivian loves “creating beautiful things that help people see that healing is not linear.” As an artist, makeup expert, and someone who lives with scleroderma, she speaks from experience.

Diagnosed at age 14, Vivian credits this disease for making her “focus on exactly what I want.” Scleroderma’s biggest impact has been her reduced arm and shoulder mobility. “I have to remind myself that mobility is not just physical—it’s also mental too,” she says. “I constantly remind myself to not limit my thoughts based on the limitations of my body.”

For Vivian, the most frustrating part of scleroderma is “there not being a cure.” She has to explain to “friends, lovers, and people in general how a seemingly invisible disability affects my body.” This is why she’s hopeful that research will find a cure. In the meantime, she wants research to provide “even better treatment or therapy to manage the symptoms.” 

Vivian makes a difference by letting people know scleroderma exists “through my work as a makeup artist.” She adds, “Scleroderma is not the end. I think people would be surprised to know that you can still live a happy life full of amazing experiences.” Thank you, Vivian, for bringing awareness to what scleroderma is and does. #SayScleroderma

(Photo Credit: Lilly Lilova)