IgG4-related disease (IgG4-RD) group urgently needed

General
1

Hello everyone!

I am a new user. I was informed about this website from a random user on YouTube. How amazing is that? I have just been diagnosed with IgG4 Related Disease. Specifically I am suffering from autoimmune pancreatitis. I was looking for anyone going through the same disease and maybe have a place for a detail discussion on day to day life and huge list of symptoms I am having. Is there any way a new group can be created related to this disease. I did find a Facebook group and I can post this website on or once we have a group. Maybe folks can migrate from Facebook to here? The Facebook group is a closed group. Plus there is very little privacy and people are reluctant to be open on Facebook to strangers. Please consider creating this as I am suffering from it and don’t know what to do. I don’t know how long I’ll have mobility/function of my body as there are multiple things affecting my body apart from what’s mentioned.

2

Welcome! We can look into creating a group, but I’m not personally in charge of that, so I will bring it to the attention of my higher ups. Yes, our Ben’s Friends sites offer much better protection, and are well moderated.

Sharon from ModSupport

3

Hi there Sohailali

Hello Sohailali, we are glad you found us! There are hundreds of rare diseases and a great number which are autoimmune. We have a priority list for new diseases, and one of the ways that we pick which diseases go on that list is by request.

So consider it noted! I will have a word with our Medical/Technical affairs ED and see what he says.

Seenie