HEALTH

Sclero-what? The Scourge of Scleroderma

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.

So what is Autoimmune Disease?

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.

John Hopkins Medicine

Scleroderma scarring across my back – photo circa 2015 – which has been there since I was ten-years-old.

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.

 

6 replies »

  1. I’m glad that I found your blog. I also was diagnosed with scleroderma after years of symptoms that I think went back to my teenaged years. I have limited systemic sclerosis, Sjogren’s Disease, fibromyalgia, and a bunch of doctors at this point. I post about my adventures as The Scleroderma Chronicles along with everything else going on in my garden, bookshelf and yarn stash. Be safe.

    • Thank you for finding me! I have just read your June is Scleroderma Awareness Month blog post. Another person living with systemic scleroderma contacted me last year. With all the health issues that autoimmune disease sufferers seem to succumb to, I cannot imagine what it is like to suffer from systemic scleroderma. When I received my diagnosis, the consultant told me how ‘lucky’ I was to have localised scleroderma. At the time, I wasn’t exactly delighted to have been diagnosed with another autoimmune disease, but I realise how lucky I am now. How extraordinary that you once worked in a rheumatology lab and involved in scleroderma research. I am so pleased you made contact, and I will be following your blog with great interest. You too, stay safe and keep well.

      • Don’t you hate when they compare diseases and tell you how lucky you are? I once had a doctor in an ER tell me that I was lucky that I didn’t have lupus. When I told my rheumatologist he asked if I wanted to hit him (!). I think that they are trying to cheer us up. The huge irony of my time in the rheumatology lab is that I already had symptoms and a positive ANA but I didn’t really think anything of it. I do think that I’m lucky, however, because I haven’t had fingertip ulcers and I still have the use of my hands. My doctor thinks that all the knitting is helping me: how lucky is that? Certainly it helps me mentally. 🙂
        I absolutely will keep up with your blog. I’m so glad that I bumped into you. 🙂 Stay safe!

      • I wrote you a long reply and somehow lost it?! Dang computers!! Anyway, I talked about how doctors try to cheer us up by telling us at least we don’t have some other terrible disease. I once had an ER doc tell me I was lucky to not have lupus because sometimes people actually die from it. My rheumatologist asked me if I wanted to hit him (!) Anyway, it is all not good, but I am grateful for the good things that I have. I’m glad that I’ve located you and I definitely will keep up with following your blog. Stay safe!!

      • Ah, great to hear from you again. Yes, dang computers! I have a love hate relationship with mine. Just as I think I know everything I need to, another problem rears its head. You have a firm follower in me, and I’m looking forward to reading your past and future posts. Very best wishes from Jersey, Channel Islands, UK. You too, stay safe.

Thank you very much for visiting my niche-less blog! If you have time before you leave, would love you to tell us what you think. All the best, Tessa Barrie

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