Juliana Viscardi

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New York City, New York (United States)

JULIANA VISCARDI

Scleroderma Stories Issue 1

Juliana with her children, Victor and Manuela, at a Scleroderma World Day celebration in 2019. Juliana coordinated 10 groups in Brazil (virtually) for the first time after 11 years of the existence of ABRAPES, the only group in Brazil that spreads awareness and advocates on behalf of patients.
Juliana with her children, Victor and Manuela, at a Scleroderma World Day celebration in 2019. Juliana coordinated 10 groups in Brazil (virtually) for the first time after 11 years of the existence of ABRAPES, the only group in Brazil that spreads awareness and advocates on behalf of patients.

How has scleroderma affected your life?

I am Juliana, 46 years old, diffuse scleroderma… and giving my all to see more years with my kids, the best way that I can. I am a mom of two fighters: Victor, who is sixteen, and Manuela, who will turn fifteen this coming March. We have been through so much, like many of us with scleroderma.

Within two years, I lost close to everything that I had built materially. We lost our dream home… We lost a marriage of seventeen years… We lost stability as we knew it.

We are still struggling. Hard. Getting sick and abandoned just made our survival that much more profound.

When were you diagnosed?

I was diagnosed in 2015… I had the “flu” and my symptoms were camouflaged. It was the start of my “journey”, as I like to say it. If not for an elective surgery and, consequently, a visit to the pulmonologist as a routine check-up, I don’t think I would have noticed right away that my lungs were acting up.

My first symptom, shortness of breath, led to my initial diagnosis of hypersensitivity pneumonitis. After failed treatment came the dreaded lung biopsy. Idiopathic Pulmonary Fibrosis was my second diagnosis… and a death certificate!

Over the next year and a half, I developed many new symptoms. These symptoms, red flags to the rheumatic condition, led to my scleroderma diagnosis. 

When your diagnosis changed to systemic sclerosis, how did you feel?

As with all of us, I had never heard of scleroderma before my diagnosis, and I did not know anyone afflicted by it.

To be honest, when my diagnosis changed from IPF to scleroderma, my pulmonologist was relieved. She told me I had a better chance and treatment with it. So, I was relieved in comparison but really overwhelmed by all of the new symptoms.

What mindset changes have you made since being diagnosed?

Well, it is a rollercoaster of ups and downs. Resilience and resistance with a lot of acceptance of what the situation requires of you. Not easy. Not constant. You take it as it comes, you adapt. There’s no other way!

Mentally, you have to be well. Since the beginning, I have been on therapy and dealing with depression. It is a must to take care of your new body, your mental state, and your spiritual state.

Scleroderma requires a dive into yourself… an ultimatum on self-care.

What advice do you have for those with scleroderma or other chronic illnesses?

Advice? Hold on tight to your loved ones! The rest is a crash course on how to become a fighter!

Be sure to follow us on Instagram and Facebook (@sclerounited) to see more scleroderma warriors’ journeys in our weekly Sclero Sunday series.

Are you a scleroderma warrior? We’d love to interview you for Scleroderma Stories! Please visit tinyurl.com/share-my-sclero-story or email us at contact@sclerounited.us