so happy this group exists
My name is Elizabeth and I'm 24 and I felt like I was in a solo no man's land until I found this site yesterday. There are no support groups meeting in my state and none of my family or friends have any form of auto-immune disease so it's been a lonely road so far.
I got diagnosed with lupus January 24th while in Cape Town, South Africa. Since then, I have been at home with my parents since February recovering (it turns out I had some extensive kidney involvement).
Part of my isolation is that I don't have health insurance (right now (I was supposed to be in Cape Town for 6 months so I cancelled my US health insurance and of course they don't want to pick me back up now that I have this lupus diagnosis so tell all your friends and family not to do what I did no matter how healthy they think they are.) so I have not seen a rheumatologist at all because of how expensive they are. Even in South Africa, my diagnosis was based on an ANA score and the vast amoiunt of organ involvement and my joint swelling and pain.
My nephologist told me not to be concerned that it's something else since all my labs are consistent with active lupus but outside of what I read online I have no idea what it really means to now have lupus.
But I am so happy to have found you all and it's such a great help.