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The Impact of Internet Virality on Scleroderma

For years, we’ve seen so many different challenges through various social media channels. Challenges like the ALS Ice Bucket Challenge, No Shave November (otherwise known as Movember), dance challenges, the list goes on!

What’s the one thing that connects these challenges? They go viral.

As you might now, we have four core pillars that we have developed and committed to help guide our mission, vision and every day work. Those pillars are Patient Support, Research, Advocacy and Awareness!

So why does going viral matter?

I’m sure many people can relate to the sentiment that not enough people know what scleroderma is, there’s simply not enough awareness surrounding this rare disease. While social media can be a mixed bag, we see it as a tool. Social media platforms like Instagram and Tiktok give us the opportunity to reach a completely different audience with the way the algorithm works. Social media algorithms are a set of rules and signals that automatically ranks content on a social media platform based on how likely each individual social media user is to like the content and interact with it. It can then spread through one’s network, introducing friends, family or acquaintances to the content that you interact with.

Social Media also gives us the opportunity to connect with people all over the world.

Our biggest hope one day is to find a cure. We hope to get to that point by spreading more awareness so people are interested in learning more, or even delving into a career revolved around Scleroderma.

We created the a series of #SclerodermaSymptoms Challenges to give able-bodied people the opportunity to simply get a better understanding of what people living with Scleroderma go through. There are 4 challenges that we created for Rare Disease Month.

1. ICE-olation Challenge

We created this challenge to give people an idea of what having (very mild) Raynaud's feels like. Raynaud's can cause complications with hand mobility, along with other various symptoms someone with Scleroderma lives with.

To participate in this challenge, we submerged our hands in ice water and held them until they were numb. Then we buttoned up a shirt! It sounds easy but it's harder than it looks!

2. Balloon Challenge

This challenge is based on Interstitial Lung Disease (ILD). 8/10 Canadians experience fibrosis and scarring in the lungs and weakened respiratory muscles, leading to shortness of breath and persistent coughing. Scleroderma-associated ILD is a chronic lung disease in which scar tissue and/or inflammation builds up in the walls of the air sacs of the lungs.

To participate in this challenge, all you need is a balloon and straw.

3. Toothbrush Challenge

Facial scleroderma is common, resulting in hard, tightened skin, noticeably around the lips. With tight skin, it isn't easy to brush your teeth. You probably have never thought about it before because it seems like something everyone can do, but for someone with scleroderma, it's a challenge.

We wanted to make this challenge as accessible as possible; you already have the items necessary to try this challenge out at home - a toothbrush and toothpaste! (Ruler to measure 1 cm optional)

4. Sticky Fingers Challenge

Digital Ulcers are painful and debilitating; approximately 40% of people living with scleroderma will develop digital ulcers in their lifetime. Digital ulcers are also closely linked to Raynaud's due to poor blood flow. Other symptoms that affect hand mobility are calcinosis, skin thickening, and tight skin. Daily tasks such as washing dishes, buttoning up shirts, or holding a glass becomes a challenge.

It's as simple as taping your fingers and joints together. This will lightly replicate the limited hand mobility that people living with scleroderma experience every day.

An easy way to help us raise awareness for a cure is to share our posts/videos with anyone you can. A fun fact is that you DO know what scleroderma is, share it! The more people are aware, the closer we can get to a cure.

Follow us on Tiktok: @SclerodermaCan

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