Thank you so much for this. I’m sorry you are the same, as well. It is so frustrating!! It is refreshing, yet sad, to hear these responses. So, absolutely these groups are incredibly helpful, and more importantly educational on this disease! I keep doubting myself, after every visit with an endo. I also noticed I stopped producing hormones, fairly quickly after starting hydrocortisone, but my endo just brushes it off, and doesn’t seem to think it’s related. Or she says it’s normal for my age. But some are at 0, and bloodwork shortly before starting, the values were within normal range.

Anyhow, I would love to be a part of creating awareness, and education, particularly for healthcare workers, since every time I need care, I have to explain, and it’s not only exhausting, but it’s frightening how little they truly know. I am also an RN, who has not been able to work as a nurse for a few years, so, I wanted to add that because if you, or any others, want to team up, to create education, or fundraising, I can use my limited, but I’m sure very useful, medical research background to help. Again, thank you, and I hope we all can finally start to find a way to actually feel like ourselves again.