“This post was sponsored by Scleroderma as part of an Influencer Activation for Influence Central.”
Some friends and I went for lunch last year. One of them had been having some medical issues for a while. She had had test after test done, and finally got a diagnosis. While we were sitting at the table she dropped the bomb shell. “I have scleroderma.” As she started to explain what it was, I interrupted and said, “I am so sorry, I know what it is… I have no words.”
I think she was surprised I knew what it was, because a lot of people don’t, and so I really want everyone to share that June is Scleroderma Awareness Month. The reason I know about it is because I have seen it before, twice. Sadly both another friend and a relative were diagnosed with it and both of them lost their battle to it.
Scleroderma is a hard disease to live with, and it’s a hard disease to watch a loved one live with. Watching my dear friend’s skin harden in a rapid amount of time because her body was producing too much collagen was extremely difficult. The isolation that she felt due to it was unexpected as well. Her speech suffered and people felt uncomfortable around her because they just didn’t know enough or anything about Scleroderma and its affects.
Scleroderma is an autoimmune disease that has no known cause and currently no cure. Research is vital, but because very few people know about it, researchers don’t always get the funding and resources they need.
Those familiar with Scleroderma know that the symptoms can present themselves differently in different people. Symptoms ranging from hardening skin and joint pain, to digestive issues and lung scarring, Scleroderma often leaves sufferers feeling confused, and scared in addition to the physical pain they endure each day as their body is attacking itself. Interestingly enough this disease primarily affects women between the ages of 30 and 50.
To see this infographic larger you can click this link; Scleroderma Aware Infographic – FINAL
Here’s another reason I want to ensure that more people know about Scleroderma so more funding and research can be put toward finding a cure. Do you see that 90% statistic in the infographic, the one that says 90% of systemic patients experience Raynaud’s Phenomenon. Yeah, I have that. While Raynaud’s can be a primary disease, it can also be a secondary or masking symptom of Scleroderma. The disease is so rare; it only affects 1 in 906 people, but I’d be lying if I said that doesn’t concern me due to my current Raynaud’s Phenomenon.
So please I encourage you, during June to Take the Scleroderma Pledge. It’s not difficult to do. Just fill out your name and e-mail address and pledge to tell at least one other person about Scleroderma to increase awareness of this hard disease. When you’re done you can easily share on Facebook and Twitter.
Or join the Thunderclap project below. By joining, on June 29, the message will be shared on your social media accounts. Lets get this viral, you tell two friends, and they tell two friends, and they tell two friends, so everyone will know about Scleroderma.
I know my friends and family that have experienced life with Scleroderma are grateful for anything you do to promote awareness by pledging to tell just one person about this #hardword and even harder disease. I thank you too, because should a physician ever sit me down and diagnose me with that hard word I want to know that there is funding and research to give me the best fighting chance I can have against this hard disease.