The first challenge for most of us is getting a swift diagnosis. Many of us live with the symptoms for 2 years on average before we know what is causing the problem. This is partly because it is quite rare (although well documented) and, consequently, there is a low level of awareness of the diseases.
Another difficulty with diagnosis is the variety of symptoms and sites of the blisters or rashes. They may appear on the skin and be confused with other skin problems. Or our disease might start with a painful, ulcerated mouth. In the latter case, the initial potential diagnosis sometimes comes from a well-educated and observant dentist. As well as the mouth, nose, eyes and other mucous membranes may also be involved.
Once pemphigus or pemphigoid is suspected, confirmation comes from a number of tests. These include a biopsy of an affected area which may show the layers of skin or mucous membrane which are separating to create a blister and specialised immunofluorescence tests. These help to determine the diagnosis of and type of pemphigus or pemphigoid.