vasculitis facebook

i posted some comments the other day,which a lot of people agreed with,because the administrators,did not agree with the comments ,ive since been banned

i find this absolutely disgusting

i suffer from wg ,and have now been banned by a person who doesnt even have the illness

im posting this and fully expect ,it to be deleted,and if it is,thanks,you really have no appreciation of vasculitis

anyway keep fighting the illness and dont let the facebbook vasculitis police get you down

5 Replies

  • I have written a private e-mail to Keith and hope that this has resolved the situation. We would not like vasculitis patients, irrespective of which of the vasculitides they have, to think that the Trust does not appreciate the problems encountered.

    With only one exception, the moderators here and on Facebook are vasculitis patients, and the one exception has lived and coped with a vasculitis patient for over 10 years, so we do understand and we are able to answer from different perspectives.

    PatriciaAnn (Vasculitis UK)

  • hello pat,i havent received an e mail,but look forward to reading the contents

  • I don't know what this is about, I don't use Facebook, but believe me, my husband has WG and I try to share every part of it with him, so even though I do not have it, I do understand.

  • ihello nadine,its about freedom of speech,because the admin on the site dont agree with your comments,they ban you,welcome to britain 2013

  • As an Admin of this group I would be obliged if this correspondence could cease. I have tried to resolve the situation and sent an appropriate reply to Keith explaining the situation, and I have tried to resolve matters here.

    I have discussed this matter with the other Admins and I'm afraid I will have no option but to remove this thread if it is continued.

    PatriciaAnn (Vasculitis UK)

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