Replying to questions: I just wanted to say... - Vasculitis UK

Vasculitis UK

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Replying to questions

PatriciaAnn profile image
7 Replies

I just wanted to say that Susan and John, and myself as "Vasculitis UK" like to try and answer questions as quickly as we possibly can, if we feel we have something to say which might be helpful. However, our intention isn't to stifle remarks and comments that other members might want to make.

So please, even if we comment don't let that stop any of you putting your point of view forward and helping the person posting the question. J&S and I don't know it all and we are just as ready as everyone else to learn from other members and to hear of their experiences - that's what it's all about.. Best wishes

Patricia

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PatriciaAnn profile image
PatriciaAnn
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7 Replies
BooBoo39 profile image
BooBoo39Volunteer

Hi Patricia, please don't ever feel that you'Vasculitis UK' are stifling any further comments.Often replies/concerns raised by you act as a spring board for further response and other times your replies are very objective and rounded that they require little or no further tweaking/input. So please please do not worry on that point. I am sure that everyone will agree this is a very succesful and informative site, if this had been available when i was diagnosed in 2006 life would have not felt so isolated. Keep up the good work !

Many thanks

Jo

Ziggy profile image
Ziggy

The information, guidance support that you give is fantastic and so helpful that I learn more and more about this weird illness. Consultants I find can not support you in their 10-20 minute period and you have a lot to cover since your last appointment which can be between 3-6 months, depending on your consultant! Everyone's queries are also fantastic and this site i am sure helps a number of people that may not even write anything. Thank You Susan, John and Pat for the 'gift' you are able to give many people out there - it does help and support us!

Sarahjh2004 profile image
Sarahjh2004

I agree with everyone else. I was completely unsupported until I found you guys. To be able to ask questions, hear about other people's experiences and feel part of a community has really helped.

A big thank you

Sarah

I'd like to give a big thankyou to Pat, Susan and John for all their support, knowledge and the committed work they do for Vasc UK...where would we all be without you?? I felt so lost before I joined and knowing that there is such a good support site makes me feel able to cope and feel I am amongst people who understand and who are going through similar health problems. So keep up the good work...you are our Gurus so to speak!! Best wishes, Sheila

louisej profile image
louisej

I would also like to thank you for all your help, it is a great site

THANK you

annie330 profile image
annie330

I would just reiterate want everyone else has said. I have only positive things to say about the site and of Susan, John and Pat.

I feel that I have a place to rant, ask questions, provide my personal experiences, learn new things and all in an environment where people understand how you feel.

Great site, great people and great support network.

PatriciaAnn profile image
PatriciaAnn

Thank you all for the kind things you have said. We are so glad that this group gives info, support and perhaps comfort to other vasculitis patients. I was worried that we might appears as "so-and-so know-alls".

Patricia

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