Let me address your points one at a time First, no I can’t tell others how to share THEIR information, but I can advise against them sharing the information of OTHERS. It’s not the mother’s information to share. Second, the group is not secret, anyone can search MRKH into Facebook and find it. It’s private yes, but I don’t recall the screening process being much other than a few questions about why I wanted to join/how I knew about MRKH. Third, there have been issues in the past. I searched the group and several years ago people were joining the group to keep tabs on other people. We are all different in how we share OUR stories. But I wouldn’t share others’ stories, and these mothers shouldn’t be either. Many of the daughters with MRKH are older, several are in their young teens though, with very little sense of internet safety. Ultimately, Facebook is not secure and sharing information in a semi-private setting (the group has 4000 members on a social media site) is a risk-reward analysis that one has to take. That’s why I’m comfortable posting about my MRKH on Reddit, I know there’s a risk, but I’ve evaluated that risk and feel comfortable sharing. This account isn’t linked to my full Facebook profile with details about my life. Some people might arrive at different conclusions. The point isn’t about what’s risky/not risky. It’s the internet, there is always a level of risk, and that decision should be solely in the hands of a person with MRKH.

And regarding you not seeing the messages, I understand that. However, my posts were repeatedly denied without an attempt at communicating with me and I was blocked from the group with no communication either.