Raynauds for instance can be one or the other. Simple explanation:
Interesting read Nel. No wonder I never knew what to call EM so I just referred to it as my condition. I know most people don't want a disease to be causing this but I kind of do if we can find out which one so we can treat that and in turn hopefully get rid of this EM! If that isn't the way it's going to play out then no thank you on the having some sort of underlying disease.
Thank you for sharing,
I always refer to it as a condition too. Disease sounds a bit too scary. Syndrome describes it best as it never seems to stand alone but my syndrome is not yours if that makes sense. All the same and all different.
Makes perfect sense to me Nel. I think that is why it is so difficult understand.other than primary EM it is more of a syndrome than a disease itself. With different diseases or causes for it happening leading to different treatments helping different people.
and to think I once thought that when I knew what it was it would get sorted…
Yes. Me too. I thought if I could just get a diagnosis I can fix it! Not so easy unfortunately. Not impossible but not so easy
Great article Nel.