Rare Disease Day 2017

Today is Rare Disease Day. All over the world people with rare diseases spread awareness. And so do I. I have a rare disease – it is called systemic sclerosis. In daily term scleroderma. Scleroderma is an auto-immune disease meaning that your body is attacking itself, the immune system is working against itself. In scleroderma […]

Godt nytår 2011–Happy New Year 2011

Så skiftes kalenderen ud og vi står overfor endnu et sklerodermi år på godt og ondt. Mit 2010 har været en rutschebanetur hvis man blot kigger på min sklerodermi. Det KUNNE have været værre – det ved jeg udmærket. Men for mig – og mig isoleret – så synes jeg at det har været alt […]

Long time no seeing

I has been a while since my last entry. I know. I am sorry for that. I have been very busy the past months. A lot has happened in my life and my surroundings. I have been on vaccation to London – visiting a dear friend of mine who lives there. And I saw the […]

Itchy curly fingers

My fingers are starting to bother me, as mentioned here. Not much, but they dont work right, if you know what I mean. In the morning they are stiff for some time – for about 30 minutes or so – and then I can bend them into my hand as a “normal” person. Let’s not […]

My story

Ok, this is how it all started for me. In winter 2004 or 2005 I started to suffer from Raynaud’s. I first didn’t know what happened to my fingers. When I went out shopping I could drop the shopping bag on the floor and there was no feeling in the fingers. My fingers were all […]