In early March of 2021, my husband Denny and I packed up the car with our dog Birdie in tow, headed for the Mayo Clinic in Rochester, MN. I remember driving most of the way, fueled by fear and anticipation, just wanting to get some answers.
By then, in addition to swollen hands, legs and feet, I was experiencing additional symptoms of shortness of breath and extreme fatigue. The zinging nerve pains in my fingers were excruciating and the open wounds on them refused to heal no matter what I tried.
Mayo had scheduled me for several appointments with specialists including Rheumatology, cardiology, and vascular health, in addition to loads of bloodwork and diagnostics. But they were clear that more could be added depending on their findings.
Our first appointment was with the rheumatologist. She performed a test called the Nailfold Capillariscopy test where she looked at the beds of my fingernails through a high powered lens. It revealed the damage that was being caused by the Raynaud’s driven vaso-spasms and was the final piece she needed to confirm what she already knew.
She said, “you have a disease called Scleroderma. It’s very rare and there is no cure. It’s a progressive disease but there’s no way to really predict how it will progress for you.
I sat in shock. A couple of months into my symptoms I had consulted “Dr. Google” and Scleroderma came up as an option. But I quickly dismissed it because all of the information was scary, dire and offered little hope.
There are several complex variations of Scleroderma with two main types being:
Localized Scleroderma:
* This type primarily affects the skin and may also affect underlying tissues like muscles and bone.
Systemic Scleroderma
* This more serious type affects the skin, blood circulation, and internal organs. The two main subtypes of systemic sclerosis: limited and diffuse:
- Limited Scleroderma:
Skin thickening is typically less widespread, often confined to the fingers, hands, and face. It can also be referred to as CREST syndrome.
- Diffuse Scleroderma: Skin thickening occurs more rapidly and affects a greater area of the skin, often including the arms, legs, and torso. Internal organ involvement, such as lung, kidney, or heart problems, is more common in
At my initial diagnosis, the rheumatologist thought that I had Limited…That is, until I went for the additional appointments and tests that week, which revealed just how much my body was being affected.
