Support Groups/Meetings or a Website ??

[Lupie_Sal]

My local group has been struggling for a few years now, not many come to meetings and no-one wants to be on the committee - is the way forward a local group website instead ??

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I think this site is good as an online support but I know I would still maybe like to meet real people just to chat. Its a shame that lupus means that as a group we maybe can't commit to anything regular in case we have to let the people down that are depending on us. Maybe to have smaller local groups on here if it is possible might be the answer and to organize area meets through this website?

[loops1983]

not a bad idea!

[Paul_Howard Partner LUPUS UK]

Hi Lupie_Sal,

I know quite a few of the regional groups have set up facebook pages now. It is a really useful way for people to find out about the groups and what they are up to. If you every have any group events that you'd like me to publicise to attract some new people then please let me know and I can pop them up on the LUPUS UK facebook page.

[Lupie_Sal in reply to Paul_Howard]

Thanks Paul We have a facebook page and group. I am really looking into a website - some mums at school have just set up a web business so hopefully it will be up and running soon.

[irenestephen]

Twice attended a group but, for me anyway, I felt more depressed after I had been than before! Found them to be more a moaning session about things rather than getting any helpful comments on how other people cope and deal with this desease.

I like this link as it is a question/answer site and certainly, for me anyway, a lot more helpful and it reaches out to a lot more people.

Maybe I was just unfortunate with my experience but that is the way it was for me.

[lupie-lass]

I would actually like to be able to go somewhere and meet people who knows exactly what it's like to be us

[Paul_Howard Partner LUPUS UK in reply to lupie-lass]

Hi Lupie-lass,

If you'd like details about your nearest regional support group then let me know where you live and I can send you some details.

[Kirsty2510 in reply to lupie-lass]

Hi Lupie Lass

After months I came across link for finding' people near you'. I'm a slow learner obviously !!! I know I am not next door to you but 40 miles away. Did you ever find a group ? There are a few of us around the Borders . Maybe we could have an occasional meet 1/2 way ?

I feel a bit isolated and hate boring my family with all of the SLE stuff !

Hope you have had a good Christmas

Ann

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i'm often not well enough to go, not allowed to drive, and would have to rely on others or pay very expensive taxi fairs also sometimes the lupus is so time consuming going out again to do something related to it seems hard.

so i like the blog