The needs of patients with systemic sclerosis--what are the difficulties encountered?

When the diagnosis of systemic sclerosis (SSc) is made and you are told "You have SSc", it is a strange feeling for the patient, because you don't yet know what it is exactly. It is a very intense shock to hear this, and it is also difficult to try to imagine what will follow. There is no cure for SSc; there are just treatments that are capable of reducing the symptoms. The main difficulties and pitfalls encountered by the patients occur: before the diagnosis; during treatment; at the hospital and with the physicians; if surgery is necessary; at home; with family and friends… How do you live with SSc? You need strong, active support to help you to live with this illness; without this, we cannot handle it. The way to communicate, to inform, to consider this disease is changing, because times are changing, patients are changing, and the opinions of the specialists are also changing. Of course it's a long way, but what we, the patients, hope for is to be better understood by you, the doctors. Please pay attention to what we say; we're the ones suffering from this disease. SSc is part of us; we are not merely medical cases! Please think about it. Together we can help you to fight, to find out more, to find a cure.