Scleroderma - Hard word, harder to fight alone

Raising another generation of patient advocates

At the end of October, PHA Canada had the pleasure of being invited back to the 42nd annual Scleroderma BC conference in Burnaby.

For those who don’t know, scleroderma is an autoimmune condition that often involves hardening of the blood vessels, which we know can lead to pulmonary arterial hypertension.

The Scleroderma Association of BC (SABC)’s president Cecille Soriano and I connected last year over our mutual stories of being a young person with a sudden onset of chronic illness. She and I have been dreaming up ideas on how to inspire more awareness and advocacy in our local communities throughout Metro Vancouver. Her whole family attends the event every year and it brings me as much joy as when I see the love, support, and connection shown at PH events. Those of you who attended our Vancouver PH Symposium in September may have chatted with their charming board member Kenny Reid at our exhibition tables, and it goes to show how the whole group of them is an incredibly fun bunch, and the perfect sibling to our community.

During the research presentations, my ears perked up hearing the words “angiogram” and “tadalafil”, yet another couple of twin beads on each of our shared strings. I was especially surprised to find out that there is a team working to get the inhaled PH therapy, seralutinib (not yet available in Canada), converted to a topical treatment to help with Raynaud’s - another pesky type of narrowing of the blood vessels - and wouldn’t that be amazing to share science that already exists with our fellow patients?

One of my favourite items on the agenda was the patient panel with beautifully insightful questions and open discussion on how to maintain your sense of self within the disease space. It’s something that I wish for each of my PHriends - to not feel so alone in our diagnoses and realize that there is a whole corner of the internet bursting with disabled joy and tiny wins, full of like-minded people who just get it.

We finished the day with a chair yoga session led by patient Teressa over Zoom. She actually offers virtual sessions multiple times a week and paid particular attention to encouraging each of us to go at our own pace, breathe how we needed, and provided modifications to the movements if not all of them were accessible to our bodies that day.

Last year, especially as we were trying to advance the push of sotatercept in each province, I referred to our mutual advocacy as a “tag team.” This year, I finished the event with feelings of how truly interconnected our not-so-different experiences are in the world of chronic illness. It’s not so isolating when you realize how many people live with invisible conditions, and maybe if we just keep speaking our truths, continuing to educate, and fighting to shed light on societal barriers, we’ll make it just that much easier for future spoonies to have some (although slightly thickened) skin in the game.