General Discussion
In reply to the discussion: Thank God Facebook is down [View all]Ms. Toad
(33,992 posts)Stores are not a necessity to live, either. They are merely the primary current platform to distribute food (which is the necessity).
Medical support communities are a necessity for those of us with rare, chronic, and deadly diseases. Facebeook is merely the platform that that allow us to connect with the few others around the globe in the same condition.
But for these medical support groups, several people I know would have died for lack of a transplant (cadaver organs are in short supply, my daughter's disease makes her appear healthier than her organ actually is, and the organ can be transplanted from a live donor - several of which have connected via medical support groups; I was tested as a donor for a young man about my daughter's age because he was close to transplant than my daughter - and by the time she will need an organ I will be too old to donate.);
many children I know are stlll living with their original organs - rather than being on their second or third transplant - because of an accidental medical discovery that puts their disease in remission a discovery that was spread among parents largely by word of mouth via medical support groups.
Most of the research on my daughter's disease now recruits participants through the medical support groups. There are so few in any one medical practice - EVEN one as large as Mayo or the Cleveland Clinc - that there is no other way to gather enough particpants for medical trials.