People who responded to the patient-driven survey “Living with Lupus”/Lupus European Online in 2010 told that the most bother of having the disease was pain in muscles and joints and fatigue. Both these problems can be extremely difficult to communicate to the specialist when they are without any physical markings or subject to special lab results. They are diffuse and not easily measurable yet experienced by resp. 90% and 83% of lupus patients. Rare and complex RMD can be hard to diagnose and then next step for the patient is to be admitted for consultation and treatments with a specialist trained and experienced in this particular disease. Having a rare and/or complex RMD is typically also a condition with various other disease manifestations involving more than one other medical field than rheumatology. Care can be understood from three different points – the medical view, the physical options for attending clinic and treatment services and finally the psychological aspect. Recent studies have shed some light on these issues and some of these finding will be presented taking onset in lupus and show the patient’s view on access, specialist and care.
Disclosure of Interest None Declared
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