Living with Scleroderma

Juliana’s Scleroderma Advocacy

By August 16, 2021No Comments
Juliana's scleroderma advocacy

Scleroderma advocacy began with Juliana’s diagnosis. “The minute I found out about my rare condition, I started advocating for my rights,” she says, “and I then founded 10 regional groups, chapters in Brazil.” 

She became an advocate while managing scleroderma’s effects, not just physically but also personally. “My first time learning about scleroderma was when my pulmonologist advised seeking a rheumatologist in 2016,” says Juliana. “My journey was a bumpy one.”

Within six months of her diagnosis, Juliana faced major changes to her life. “Never forget that a disease is not only physical. It is social, familial, mental, and financial,” she says. “My children and I have been deeply affected by scleroderma and its ripple effect through many areas of our lives.”

Through all this, she is consistent in her drive to help those with scleroderma. “I give a huge part of my time and effort translating, researching, doing digital art, and helping with campaigns worldwide.” She also actively participates in the UN Resolution on Persons Living with a Rare Disease and their Families.

“Research is my 2nd primary reason to fight, 1st being my children!” With these drivers behind her, Juliana is a force to be reckoned with.