In 2015, I found out I had scleroderma. I’d known for a while that I might have it but, after the official diagnosis, it turned out I had it for much longer than I initially thought.
It is a strange and diverse disease that nobody seems to have heard of, and it manifests itself in many different ways.
I was on holiday in Portugal during August 2014. Do you remember going on holiday? That carefree time of year when we used to take ourselves away for two weeks summer? Anyway, I was struggling to get into the previous year’s swimsuit. Why hadn’t I noticed before that my stomach had become large and hard? Too busy rushing around focussing on getting away from it all during that two-week break, I expect.
The skin covering this hard protuberance that once was my late, lamented washboard tummy was itchy and shiny, with had a propensity to change colour. I’d also developed hard love handles, one much bigger than the other. The Michelin Man’s body was more in proportion than mine.
I thought the itchiness might be something to do with the Portuguese heat and assumed I had reached that stage of my life when I should start doing something about my middle-aged portliness. On my return home, my shiny, itchy skin hadn’t gone away, so I went to see my GP, who recognised the symptoms, having only seen it in one other patient.
The official scleroderma diagnosis was another addition to my list of Autoimmune Diseases that I have unwittingly collected over the years. I have lived with Collagenous Colitis for over twenty years, arthritis for, at least, ten. Psoriasis, most of my life and now, apparently, scleroderma. These days I am well looked after by a dermatologist, rheumatologist and a gastroenterologist.
Scleroderma is a relatively rare, chronic disease of the immune system, blood vessels and connective tissue.
2.5 million people worldwide have it, and there are around 19,000 of us in the UK. I am lucky because I have localised scleroderma. Systemic scleroderma, is far more serious, affecting not only the skin but the heart, oesophagus, blood vessels, kidneys, lungs, blood pressure and digestive system.
Autoimmune disease happens when the body’s natural defence system can’t tell the difference between your own cells and foreign cells, causing the body to mistakenly attack normal cells. There are more than 80 types of autoimmune diseases that affect a wide range of body parts.
When I said I’d had scleroderma for some time; it would appear I’ve had it for a very long time. The dermatologist told me that this rather unnatractive little number across my back is scleroderma scarring. Something I have lived with for most of my life.
Although my mother had very little to do with my child care, she told me that this mark was a result of a horse-riding accident when I was ten-years-old. The resulting scar from a hematoma on my back following the fall is what she told me. So, I have lived with this thing for most of my life and had no idea what it actually was, but do now.