CIDP not a highlight
AnonymousJanuary 10, 2012 at 2:31 pm
It’s been a while since I’ve been here on the forum and I am sorry for that. If it weren’t for this venue and the people on it I never would have gotten through my first couple if years of treatment. So I have a very special place in my heart for the Foundation and what it offers. That being said, I just received my latest copy of the GBS/CIDP newsletter, The Communicator, and I find myself once again disappointed. It just seems that CIDP is rarely the highlight and our stories of struggle are not as welcome as GBS stories of “tragedy to recovery”. Perhaps because with CIDP there is less of a final outcome as with GBS due to it’s chronic nature. But I don’t think a happy ending is necessarily the only inspiration to be had. This has made me determined to submit my own story in hopes that I put my “money where my mouth is”. I just wondered if any body else has observed this and would be willing to challenge my complaint with your own CIDP story. I hope for everyones peacefulness in this new year ahead. By whatever means possible.
March 4, 2012 at 10:00 pm
That’s a good idea. It may be that there are fewer such stories published merely because fewer are submitted, because, as you indicate, the inconclusive nature of the condition.
I don’t mind second billing, however. CIDP could be better covered, but the incidence is lower than for GBS, and the condition less well understood, which explain lower coverage.
March 5, 2012 at 1:07 am
Linda, how are you!!! I haven’t seen you around in a long time! How is your dog? I loved that picture you had as an avatar with your dog. I think gbs is focused on more because the people who started the foundation had gbs, so probably they researched more info. in their quest for answers who knows. Plus, for me, the info that I search and seek out seems to stick more rather than if it is just given to me, I kind of feel like I learn more when I have to look for it.
Are you still doing well? Please write back
March 5, 2012 at 1:08 am
AnonymousApril 4, 2012 at 1:27 pm
Another possible explanation for the lack of ‘CIDP stories’: patients with CIDP often complain that they cannot use their computer anymore. And without that it is very hard to submit your story, chat with fellow patients, etcetera. Elsie: I am very interested in your story. Where can I find it?
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