Celebrating Signs That Scleroderma Awareness Is Increasing
Note: The headline of this story was updated April 19, 2022, to clarify that scleroderma isn’t becoming less rare, but rather awareness of the disease is increasing.
One evening in January 2014, I answered a call from my doctor’s office. After going over my lab results, a nurse nonchalantly told me I had scleroderma. I pressed her for more information, but she explained that I’d have to wait to discuss it with the doctor.
I’m an impatient person, the type who hunts down a hidden gift, unwraps it, and then rewraps it because I can’t wait until Christmas morning. So I turned to Dr. Google for answers.
Turning to the internet was a mistake
I typed “scleroderma” into the Google search bar, and the first bit of information to appear was a quick overview. I stared at my phone long enough to brand the details into my memory forever. It described scleroderma as “very rare” and “fewer than 100,000 U.S. cases per year.” That was followed by “no cure.” Scleroderma, it said, “can last for years or be lifelong.”
I recall rolling my eyes and shaking my head in disbelief, as if I had a say in the matter. I was convinced I’d find a pill or other treatment if I looked hard enough.
That was the exact moment my nightmare began. In response, I scoured the internet for good news about scleroderma. Hour after hour, I scanned websites and scrolled through stories about the lives taken by this monster. Time seemed to slow to a snail’s pace as my nightmare grew colder and darker.
I stubbornly pressed on, but the more I read, the more hope I lost. My soul was deflating like a tire punctured by a nail. Back in 2014, I couldn’t find anything positive about this strange disease — just grim statistics and sad stories about death and suffering.
Finally some good news
It took a long time, but thankfully, I discovered some amazing social media groups of supportive warriors. I found Facebook pages dedicated to people living with the disease and sharing their success stories. They saved me. Their guidance and stories of survival are the glue that seals the gaping hole in my soul. To this day, they help me see clearly and reaffirm that my existence isn’t blanketed by doom and gloom.
The pioneers who fought years before I did are the reason I began writing my blog and then this column. I write to offer stories about surviving and thriving, and to share that new treatments are changing life expectancy statistics and helping people find some relief. New medical discoveries are happening every day, improving our lives. My goal is to help others hang on to hope for a better future. It is coming.
More diagnoses mean more answers
Last week, I typed “hand joint pain” into a search engine. I simply wanted to know why I had a painful egg-sized lump on the top of my hand where it meets the wrist. I was hoping to find information about what might have caused it, as well as a possible home remedy.
The first article to pop up included the words “causes” and “treatment” — just what I was looking for. Halfway down the page, a subheading in bold letters danced on the screen: “Scleroderma.”
It wasn’t a hospital or research website, but rather one that provided general knowledge. There were no scary “you’re going to die tomorrow” statistics, just matter-of-fact information about joint inflammation caused by an overactive immune system for unknown reasons. Back in 2014, this was the type of educational information I desperately needed.
To me, the bold letters are a sign that we are becoming less rare. Everyone’s efforts to raise awareness are working!
My excitement prompted me to do one more search. I typed the word “scleroderma” like I did eight years ago. This time, Dr. Google yielded a result I was elated to see. The updated information stated: “Rare — fewer than 200,000 U.S. cases per year.”
These new statistics are proof that fewer patients are suffering from “unknown” or “psychological” ailments. We still have a long way to go, but more people are receiving a scleroderma diagnosis today, allowing them to receive proper care and treatment options. Scleroderma is becoming more than an overlooked page in a dusty medical textbook.
This is a victory worth celebrating. Together we will continue to become less rare and more understood and accepted.
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.
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Sandy Wingen
I would love to know some of those positive facebook groups you found. I thank God every day for the positives in my disease and would love to share with others who feel the same way. Thank you for your story!