Community support, or the lack there of

[emilyking]

I've been trying to find online support groups for those who have AIS, and I have to say I'm really disappointed.  I found one, but it only had five posts in it.  There are a few who do email chains but I don't want to do that.

Having two different doctors agree that it looks like I have PAIS, I've been trying to find anyone with PAIS, who has transitioned or is gong through it, but nope. 

It really sucks, because I have no idea what to expect in the future, and in my case I have Albinism too.  Which has made things really weird, because my body is producing pigmentation.  Which should not be possible.

So, yeah.

[Kassie]

Have you looked at the group axys or accord alliance  I have communicated with axys a bit they did not work for me  but possibly for you I know the frustration I do have dsd low T  hypospadias and  other things
good luck if you want you can pm me for more info 

[Jessica Merriman]

Try here Emily!! 

http://isna.org/ 🔗

[Kassie]

FYI Jessica and others isna.org closed there doors in 2008  The material is outdated to find new up to date material and research you would want to look at the other two groups I mentioned in my previous post

[Jessica Merriman]

isna.org closed there doors in 2008 

Well that sucks! Thanks for the info!! 

[Kassie]

Jessica No problem I have looked in to this stuff for over 15 years do to my own issues just try and help when I can as it is hard and painful at times to find dead ends unfortunately