A few months after Scott was diagnosed with BVVL (back in April of 2012), the administrator of a BVVL Facebook page contacted me and invited me to joined the closed group. I am not a fan of Facebook, but since the disorder is so rare and there were no support groups in my area–much less my country–I agreed to join.

At that time, there were 30 or so families in the group and everyone was nice and supportive. I felt included and that my thoughts and opinions were welcomed and valued. Over the years, the group grew and inevitably, people joined who were not pleasant or tolerant of any opinion except their own. Unfortunately, managing the group became too much for the original administrator (mom of a young child with BVVL) and she turned over the position to another mom with a young daughter diagnosed with BVVL.

The list started going downhill shortly after. The new admin was passive-aggressive and you never knew how your posts were going to be received. In particular, I seemed to rub her the wrong way and I felt like I was walking on eggshells with every post. We disagreed on several issues, such as whether a clinical diagnosis was a “valid” diagnosis. In her mind, it was not, so my son and the other kids who had a clinical instead of a genetic diagnosis were not as “valid” as her daughter, who had a genetic diagnosis. It became obvious that those with “only” a clinical diagnosis were second-class citizens on the list.

She and I also disagreed on working with other groups to publicize BVVL and support efforts to fund research. I wanted to be collaborative and work with other groups; she did not. She believed I was passing personal information from the Facebook group to another BVVL organization, BVVL International. I was not–never have–and I told her that.

At that point, I should have reported her to Facebook and that’s one of the lessons to keep in mind if you are in a Facebook group with a dictatorial admin. Report them every time their post attacks you in some way. And keep in mind that things that happen in a Facebook group would never happen if you were in a face-to-face support group. They shouldn’t and we as group members shouldn’t tolerate them.

In April of 2016, about four years after I was invited to join the group, the admin banned my family (my son and husband had joined, too) and me from the group. We protested to her as did several other members of the group, but it did no good. I heard later from various people I had met in the group that they had dropped out because of what had happened to us. I still remain friends with many people from the group and I understand that the dictatorial admin still makes it an uninviting place. That’s so sad since families who have children with BVVL and individuals who suffer with the disorder need all the support and help they can get.

If you have BVVL and are thinking of joining the Facebook group, I would caution you to beware. Also, look on the around on the internet before you join the Facebook group. Other BVVL-related support groups have sprung up on other platforms. And, finally: If the group you join is a good place, then stay. If problems arise, don’t hesitate to report the people who are being jerks.