Good to hear you touch on this disease. My father and great uncle had diffuse scleroderma. All of what you mentioned was relevant to them, and several over people I have worked with in clinic, notably all males. What I would note is the problems with lung and diaphragmatic control with supporting rib mobility absolutely essential. Oxygen supports seem to become needed around 5-6 years post diagnosis ( that is in the small cohort I have worked with). In addition to hand function there is considerable loss of jaw and gum connective tissue, requiring facial splints and this is a particularly tricky issue to manage needing special head neck and jaw teams
hiya, yes I agree. I would suggest that limited Scleroderma could be managed outside of specialist centres (non-medical management) but any diffuse or systemic cases are going to need specialist input. I wouldn't be confident managing those types of cases with other organ involvement etc and I worked in a Rheum department for 10 years
They work in specialist centres if there are some available. We are in Australia different access to centres and the medical teams. But still need to move daily and have OT etc largely in private settings.
Good to hear you touch on this disease. My father and great uncle had diffuse scleroderma. All of what you mentioned was relevant to them, and several over people I have worked with in clinic, notably all males. What I would note is the problems with lung and diaphragmatic control with supporting rib mobility absolutely essential. Oxygen supports seem to become needed around 5-6 years post diagnosis ( that is in the small cohort I have worked with). In addition to hand function there is considerable loss of jaw and gum connective tissue, requiring facial splints and this is a particularly tricky issue to manage needing special head neck and jaw teams
hiya, yes I agree. I would suggest that limited Scleroderma could be managed outside of specialist centres (non-medical management) but any diffuse or systemic cases are going to need specialist input. I wouldn't be confident managing those types of cases with other organ involvement etc and I worked in a Rheum department for 10 years
They work in specialist centres if there are some available. We are in Australia different access to centres and the medical teams. But still need to move daily and have OT etc largely in private settings.