Its good to talk!!!!

topic posted Sat, October 24, 2009 - 6:43 AM by  Christina
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A big Hello to members old and new! :o)

There seems to be a distinct lack of activity on this group lately and I wanted to get you all back in the habit of keeping in touch again!!
You dont just have to chat about how good or bad you are feeling, or what meds you are on.. Find out a little about each other and I am sure that you will discover that we have a lot in common!! :o)

I am trying to get a head-count of exactly how many members we have between the 3 groups that we have set up... This one, the Google group and the Facebook group... to know exactly how many sufferers have found us. ALSO I am really keen to find out which of you have relatives with CED??
A recent article I read about CED on the Gene Reviews website says that there are approximately 200 people in the world with CED. How they got this number I do not know? But I would really like to find out for sure how many people we have made contact with so far whether its online or in your own family circle. So I would really appreciate your help! :o)

Looking forward to hearing from you!


Chris. xx
posted by:
Christina
United Kingdom
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  • Re: Its good to talk!!!!

    Mon, November 9, 2009 - 3:27 AM
    I hope everyone is doing reasonably well. I'm not looking forward to the really cold weather on its way in Minnesota (aka frozen tundra). Cold hurts. I'm a newer member and I'm still trying to figure out what might work for pain. I won't take prednisone unless my sight or hearing is endangered. Hate the stuff.

    I have CED as well as two first cousins who are classic CED body types and gait (not me I'm fat and short). Since there are over thirty cousins on that side of the family there are probably more like me who have bone deformities, but not as much pain. One more cousin had the body type and gait when he was very young, but improved as he reached adolescence. Oddly nobody in the previous generation was diagnosed with any bone disorders aside from arthritis, but at least three of them must have had the defective gene. So in my family probably at least four and maybe many more.

    I have one (more or less) adult son, a husband, and three small dogs. Two are Cavalier King Charles Spaniels and the youngest is a Cavalier-Poodle mix. All three dogs are terribly spoiled and ill-behaved. Well, except for the Princess (Patsy), she's 11 and mostly just lounges on my sofa.

    I used to have a beautiful garden, but between CED and arthritis I haven't been able to keep up with it. It has become decidedly scruffy and overgrown. I love to travel and would be receptive to meeting as many of our group members as can be assembled. Finances might be a bit of a problem, but if it were far enough in advance I'm sure I could save a little cash for a trip.

    My husband and I love to take summer trips on our motorcycle as often as my pain and the weather allow. I can't seem to tolerate cold or heat over 85 degrees Farenheit.

    Blessings to all and I hope you have a wonderful season (be it summer or winter in your hemisphere).

    Sheryl

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