If there are any other people on here who have experienced Catastrophic Antiphospholipid Syndrome (CAPS), sometimes known as Asherson's Syndrome, would you be prepared to share some details about your experience/treatment?
You may or may not have seen earlier in the year, Mary posted some information about EURORDIS (European Organisation for Rare Diseases), who have sponsored a research study into CAPS and are interested in producing better guidelines for treating this APS variant.
I am due to meet with a number of the CAPS consultants next Wednesday to discuss their findings and, using this information, begin to produce some patient guidelines/recommendations.
I can advise based on my experiences, but if there is anyone else on here who has survived this too and would be prepared to talk to me either on here or via DM so I could incorporate their advice/opinions, that would be really appreciated. My aim is to provide an accurate but inclusive patient perspective, so the more relevant voices the better. Any advice would obviously be credited to you.