A Canadian advocate tells how she's managed the disease over the years - Article from Scleroderma News
Silvia Petrozza is a powerhouse! Known as the Autoimmune Slayer, she has almost 1,700 Instagram followers and always seems to have her fingers in disease advocacy efforts in Canada. A mother of three, she also has her own business — impressive for a woman living with scleroderma since age 23.
I interviewed her by email. Following are her responses, lightly edited for clarity.
AG: Tell me about your journey to diagnosis.
SP: When I was a teenager, I unknowingly experienced Raynaud’s syndrome. My doctor chalked it up to poor circulation. However, periodically throughout my teenage years, I was sick. But my doctor never really looked into why.
In 2007, within months of having my first child, I was officially diagnosed with scleroderma. My Raynaud’s started progressing rapidly, and the pain became unbearable. I even experienced my first digital ulcer. My sister had been convinced I had lupus. However, after my initial doctor visit, scleroderma was the verdict. I immediately began looking for a specialist, which turned into a long and draining process. Because scleroderma is so rare, I had to travel quite a ways, to Toronto, for adequate care.
How difficult has it been living with scleroderma?
Living with scleroderma is hard! I’ve had to find my “new normal” in order to cope with daily life. Scleroderma can also be unpredictable. Tasks like getting dressed, doing chores, and being a mom can be very difficult. I’ve had to learn to adjust my expectations.
I’ll have days when my pain is manageable. But in order to maintain my status quo, I undergo monthly scheduled infusions of iloprost (synthetic prostacyclin, known by the brand name Ventavis and often used for pulmonary arterial hypertension). These treatments require me to leave my family, travel two hours from home, and then spend two days in bed recovering. Scleroderma doesn’t just affect me, but my family as well.
How have you managed to keep such a positive attitude?
I think I’m just unapologetically real. Of course, feeling like this came with time, but my struggles are what made me who I am. I accept the bad days and push through them. I take what I learn from my experiences and share it with others, hoping it will help them.
What have you done to advocate for scleroderma?
Advocacy is everything! It took some time in the beginning to comprehend that, because I thought if I ignored my disease, I wouldn’t have to deal with it.
Slowly, I became more involved with the scleroderma community. I would talk about my journey on social media, which has made a difference in my life. I realized that my scleroderma community needed me!
When I was first diagnosed, connecting with others wasn’t on my radar. I remember now how alone and scared I felt. My life became a dark place. So being a source of hope and building a sense of community for others empowers me.
Why is scleroderma awareness important to you?
Awareness is vital for this disease, to help find new treatments that will help us live longer, healthier lives and maybe one day even a cure. However, when living with scleroderma, sometimes the little things are a big deal. The daily struggles can really affect our lives — like grocery shopping, picking up coins, or retrieving credit cards from our wallets.
My local grocery store understands that I have deficits. They open a cashier’s line just for me, knowing that I need extra time. They also help with carrying my bags. The more people know about scleroderma, the more the little things we struggle with day to day become easier to manage.
Could Rare Disease Day, Feb. 28, be improved?
It’s hard to say. Scleroderma Society of Ontario has done a fantastic job creating these challenges that people can participate in throughout February. The challenges showcase what it’s like to live with scleroderma as well as great information about the disease.
My wish would be that scleroderma and the people living with it would get more attention. We’re true warriors! Every day we fight this insane battle. I believe we deserve credit for being so relentless and awesome.
What is the No. 1 thing you do to cope with scleroderma?
Laughter, to me, is my medicine. When I post on social media, I’ll sometimes make light of my struggles. It’s just the way I deal with pain and difficult moments. Laughing makes it easier for my loved ones and me to cope.
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.
Scleroderma Queensland Support Group