Don't you just hate the word scleroderma. You'd think that over time it would become less troublesome or by now we would have a cure! Reading Barefut's recent blog and some of the posts on the forum makes me realise how this disease affects us personally, whether we are a carer, loved one or sufferer.
In my personal condition, I think I don't do too badly -- I could be much worse! I actually said that last week to a doctor, the one who was stabbing my arm for veins. He agreed but then said, "Well, it still isn't fair." By that he meant, no matter how you are affected scleroderma isn't fair!
I suppose I could be well and moan about a cold and in that perspective, sclero isn't fair, but when I look at other people with terminal diseases such as cancer, I count myself lucky in the grand scheme of things! I suppose it has a lot to do with a positive attitude, supportive family and good medical care. It can get rough when any one of those lets you down and goodness knows I've been there too!
20 years ago it was a misdiagnosed, uncommon illness which hung on doctors lips. Now there is much more awareness of the condition -- I've noticed that when in hospital. No longer is it greeted with "What?" but "How long and how does it affect you?" I guess it's taught at medical school and thank goodness the nurses know about it too.
To find a cure we must create awareness and understanding. Never be afraid to raise your head and spread the word. Text is a beautiful thing but word of mouth is much better.
Together we'll find a cure!