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1. • CommentAuthorkjo
   • CommentTimeNov 5th 2009

    # 1Report Post
   Cogan's Syndrome-Coganites is a new group started on FaceBook for closed discussion by Cogan's syndrome sufferers. Why a closed group?..
   in a perfect world people out there would have compassion and understanding when it comes to others who have illnesses or disabilities, unfortunately, we don’t live on a perfect planet and there are those inhabitants that absolutely no amount of information will open their minds....
   
   some significant others are aware of CS complications and still expecting normal behavior,,,”get off your whiny butt and clean this house/take care of the baby/go get a job, ...I don’t feel good all the time either but I still take care of -----blah blah blah”
   
   A closed forum gives those sufferers without a support system the opportunity to vent their anger, loneliness, fear & pain with someone else who understands and not get more criticism .....they can say that “my spouse-family-friends--are butt heads and I wish they’d disappear” and not have to worry that those people can log in and read the entries....
   
   employers can’t read about the aches and pains and say “I don’t want to chance having this person working for me when their performance may be affected by the reoccurring symptoms.....
   
   “I don’t want you dating someone who is sickly and you’ll have to care for or support them...
   what if they pass these traits on....what if they’re contagious???”
   
   there are multiple reasons for having a closed forum. Some people just do not want to or can not share openly...
   
   I personally an open about my Cogan’s syndrome. I happen to be so very lucky to have friends and family that love me and understand me and accept my CS as just another weird quirk of mine and help me whenever it’s necessary...I am truly blessed....sadly, not everyone is....
   
   There is also a new FaceBook open group called Cogan's Syndrome for those who are able and willing to openly share and people are able to view and gain information about CS.
   
   Thanks, Kathi Jo