Navigating the Uncharted Waters of Scleroderma

I like to read online about how other patients experience systemic scleroderma, especially when I encounter unusual symptoms that don’t seem to have any relevance to the disease. So far, I have amassed a small collection of minor, but annoying and somewhat peculiar, ailments that puzzle me.  

These symptoms range from my nose running uncontrollably every time I eat, to the feeling that a large piece of tape is stuck to the soles of my feet. I frequently have a sensation as though the skin across my scalp has tightened, which causes annoying headaches. My gums have receded, exposing dentin and causing pain when I eat cold or crunchy foods.

I often discover at least one other person online who is also experiencing these quirky symptoms, but they still baffle me because I can’t find any reliable information to prove or disprove a link to scleroderma.

As I was pondering my latest oddity — tachycardia when I attempt to stand and engage in a task for longer than a few minutes — I remembered a common issue my clients had when I was working as a counselor. 

The issue relates to the confusion and anxiety that people experience as they transition between life changes, such as retirement, becoming a parent, or when their children leave home. While there are many other examples, those significant shifts can leave a person feeling disoriented.

The resulting confusion occurs because the person’s way of life suddenly becomes unfamiliar. I used to liken it to traveling between towns without a road map or any recognizable point of reference. It is scary when one is stuck in the middle of nowhere, unsure of which direction to take, and with no indication of what to expect at the destination. Counseling was a way to try to chart some kind of map with the client to help them feel safer and allow them to move onward toward their new location in life.

It strikes me that living with scleroderma is similar because we are in uncharted territory. As our disease is rare, there is little funding available for our dedicated researchers to chart our map in as much detail as I’m sure they would like.  

Many aspects of the various forms of scleroderma remain unclear. Currently, patients do not fully understand some of the things that happen to their bodies and whether some of their symptoms are linked to the disease, or are associated with an entirely different issue. 

While it does make living with the disease scary and unpredictable, I remind myself that there are many amazing people out there tackling those challenges and navigating the uncharted waters of scleroderma.  

Those teams of medical researchers and specialists are my heroes because they have chosen to invest their lives in helping me to understand mine. Their dedicated work takes up a significant part of their time, and I imagine that it isn’t easy trying to map out this complex and unpredictable disease. 

I wish to express a special thank-you to all of those talented, clever people for all that you continue to do. Your work is helping to paint a continually clearer picture of scleroderma, and the details are slowly and steadily becoming sharper. You continue to give me the best map possible to negotiate this disease and hope for a better tomorrow.

As a positive finish to this column, I invite you to enjoy “Sailing to Philadelphia” in honor of our researchers and medical experts. The song features the beautiful, velvety-rich voices of Mark Knopfler and James Taylor singing about two of the world’s greatest mapmakers, Charles Mason and Jeremiah Dixon.

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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 Services, and are intended to spark discussion about issues pertaining to scleroderma.