On Facebook there used to be a page where caregivers, sufferers, and family members could post about questions, comments, just about everything. Apparently that page has been a) taken down, b) limited, or c) policed by some criteria that weren’t made public. Anyone have any idea what happened? I’m thinking of starting my own that lets everyone with this disease or affected by it post. Thoughts?
Which page are you referring to, Maggie? A Ben's Friends page, or another organization? I would suggest helping out here on this community. Anyone living with Amyloidosis, whether a patient, family member, or friend is welcome to post here.
No one is sure what happened to the group. The owner of the group has been contacted by Muriel but I have not been told if she has gotten a reply yet. Some have found their way to this page, https://www.facebook.com/groups/amyloidosissupport/ which is the official group of the Amyloidosis Support Groups. Like this group, you must apply to join and be approved by a moderator. That helps keep out spammers, which at times, were a problem on that group. I pretty much join any reputable group that I come across, simply because you never know what you may learn from one of it's members. The more knowledge that we gain about this disease, the better off we all are!