Ive got a meeting with a university head of department next week concerning a possible research collaboration on a report into why APS and other autoimmune conditions can take so long to get diagnosed and what can be done to improve the situation.
tbh my brain is not working great now (multiple lesions, possible hypoxia, several autoimmune conditions) and it will not be the quickest or best piece of research in the world! But for obvious reasons I feel passionate about this subject and pushing through the brain fog to get this research done.
Im posting this post as I wondered if the charity and/ or individuals on this forum might be interested in being involved in some way. I know that MaryF had a great idea some time back for a book on seronegative APS and I thought that this report might help to address some of the unmet need that that book would have been aimed at.
I know that there are a lot of us in the diagnosis limbo boat and a lot of people will have important stories and ideas to share.
Anyways, just thought Id mention that Im doing this and see what people think.
Thanks a lot.