THANKS for sharing abuot the meetings SS! You have no idea how much you help me just here on the site and I want to thank you for that and keeping the meetings going!!
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I don't know why the number of registered affected families (on MRF and OSU websites) hasn't exploded.
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Like Bee, I have never registered anywhere either. And a bit into this "adventure"
I really wish I DID have somewhere to add myself to show the size of these numbers.
This will sound weird, but I could have SWORN when I first finally decided it was M after ruling it out a billion times because IMO some sites had inaccurate descriptions
(I KNEW I did not have a skin D/O. I knew I was DESPERATELY sick inside most of all) ... I could have SWORN the site said DO NOT register. I think it was MRF. I do know I was at some site that said they did not want anyone else registering.. they already had enough or something.
lol... Now that sounds weird to think someone would purposely hijack the site. maybe they did. Maybe I misunderstood. Maybe it was some random comment or site.
Also some time around teh beginning I debated about registering anywhere because I was afraid they might use it to deny me medical coverage in the future - either via pre-existing illness or DOP. At first I did not thinkg there was anything being covered up. I thought Drs and teh CDC would be fascinated with this and rush to help me. lol.
WEll, I guess we all need to register and we all need to advertise it. I bet only one in one hundred here is registered. Maybe less.
I know I am moving at negative 50 miles an hour, but when I sign up maybe I will start a new thread here w the direct links and hopefully others will sign too. We have to band together on this thing.