Welcome to WHL.
I am sorry, you have to deal with this new diagnosis. I have never heard of it either, wish I could help you.
We do have alot of members, from all over the world, maybe somebody has some advise for you.
Just know, that we are here for you, if you need to talk.
You have one great thing on you side, your awesome husband. I know how important a great husband is, I couldn't handle all this Lupus business, without mine.
I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).