Scleroderma Awareness Month 2016
DAY 6 Scleroderma Awareness Month: ACR / EULAR guidelines
‘improvement in skin thickening in systemic sclerosis is associated with improved survival’.
Which of course is encouraging, however, skin thickness can not be regarded as a direct indicator of internal organ involvement.
See DAY 5 Diagnostic Tests.
The sensation is similar to feeling as though your body outer layer has shrunk a few sizes too small to house your body.
This makes for routine blood tests to be impossible due to skin thickness and so a portacath / portavein can sometimes be an alternative option, as seen in today’s image.
I was prescribed methotrexate but decided to try homoeopathy and reflexology first.
This was accompanied by immense exhaustion and joint swelling and pain.
And, as it has turned out, randomly, this date, was subsequently made World Scleroderma Day! and so, it is quite meaningful and poignant for me!
Although, I no longer have skin tightening or thickening, my skin is extremely sensitive with the outer layer being quite thin, similar to tissue paper, with my sweat glands having been altered also.
This involves starting my day by bathing in liquid paraffin, and then moisturising with a thick emollient.
I use Oilatum Plus in the bath, and Hydromol cream for my body.
I have tried all sorts of different skincare product combinations, but have found that this is the best combination which works for me.
To read my article ‘Ah great, another day to spend in bed, said no Raynaud’s scleroderma patient’, Click here
An edited version of this article was published here, in my Column with Scleroderma News.
To read my articles:
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here
March Autoimmune Disease Awareness Month 2018, Click here
Global patient video, Click here
Expert Specialist Centres, Click here
2016 Rare Disease Day Patient Voice