Just diagnosed with scleroderma?
"When I was diagnosed with scleroderma, I felt completely alone. No-one had heard of it and people didnít want to know. Itís a very hard condition to explain. It was an enormous help when I discovered the Scleroderma Society and I was able to talk to other people with the condition Ė I didnít feel so isolated and they have lots of really useful information."
Often it can take a long time to get a diagnosis of scleroderma but it may also come out of the blue. Whichever way you find out, it can be upsetting and worrying for both you and the people around you. Getting any diagnosis of a chronic disease can be frightening but it is important to remember that for the majority of people with scleroderma, while you might have to make some changes over time, you are still the individual you have always been and people live long and fulfilling lives.
It is also important to remember that scleroderma is an incredibly complex disease and that means that it is different for every person. The experience of other individuals with scleroderma may have similarities with your experience, but will also be very different.
The Scleroderma Society is here to support you. We can help with information on the a wide range of issues, we have a helpline which is run by volunteers, the majority of whom have scleroderma themselves, and we run local groups and forums. You are not alone, and joining our community will help you get support from people who understand and care.