LUPUS UK
20,885 members16,573 posts

SUPPORT GROUP/FUN DAYS>>>>

Hi i'm Angie and i'm new to this site, only joined yesterday!

Was looking for some extra support and empathy as I was having a really bad few days and already I have had bundles of lovely Lupy people (my nickname for Lupus) reply with their helpful advice.

What I was looking for or would like to suggest would be a support group for regular meet ups for people to come to talk about their problems, also a chance to make new friends and also on other days, go on outtings an do some fun stuff as a group together.

So if anyone would be interested in such an idea or would like to help me form such a group please message me back an we will see where to go from there....

Thanks for reading! X

20 Replies
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Hi Cheesyquaver, already posted on your original blog but I am interested, would be interesting to see how many responses come through.x

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Thats brilliant are you the one near bluewater?

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hello angie

i think thats a wonderful idea i don t have a local support group in my area and would love to meet others who have lupus even if its only a few times a year.

the problem is we live all over the country so i dont know what you have in mind but i am interested and would be only to pleased to help.

hope you get a good responce and send me a message anytime im always looking on this site.

debbie

xx

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Hi Debbie,

Were you aware of the Thames Valley support group? I believe they meet around Reading which isn't all that far from you. Would you like contact details for the group?

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hello paul

thankyou very much for replying i would like to tell you that im in a bad place at the moment and am very emotional , as in january i was diagnosed with lupus and had to battle all sorts of feelings and needed a lot of help and support to come to terms with the disease,however last week i was in a lot of pain in my shoulders and back and heavy ache in my thighs,so i called rheumy nurse who spoke to consultant and he has come back now saying he doesn t think i have lupus at all.

i was so furious ,hurt and angry thinking i have for the last 5 months lupus, and then to be told you definaltly have an autoimmune disease but not lupus, so they are now thinking it could be polymyositis/dermayositis and im to start on steriods.which before i was told i do not need steriods and this whole mix up has left me so upset and feeling like im back to square one ,i now have to deal with different symptoms and am very scared i have a new disease to handle and come to terms with.

i looked it up on the internet which i know you shouldnt do but sometimes its so frustrating that consultants can just drop a bombshell on you and say we will talk in your next appointment and thats 6 weeks away and expect you to just get on with your life.

i dont know much about this disease but i do know that researching it on the internet is not always reassuring and has just left me petrified.

debs

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Hi Debs,

I'm sorry to hear you are going through such a turbulent time with you diagnosis. I hope that you have some answers soon and get on a treatment regimen that works for you.

There is an organisation for polymyositis, if you have a look at myositis.org.uk/ then perhaps have a chat with them and they can provide you with some information.

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where abouts are you from debbie?

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hello cheeseyquaver

i live in north surrey area near heathrow

debs

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hi there,,

I am a university,, i realy want to be part of support group and pleased to help others like us..

sushi..x

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Hi Sushi,

You are also quite close to the Thames Valley Support group by the look of things. Would you like me to put you in touch with them?

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That's great! Where you from?

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I have posted to you but will again

Lupus U/k has groups all over the u/k and the local groups would love to hear from you.

Joining Lupus U/K is like joining another family,the help and support is second to none,and the more people that join the bigger say they have in getting the right help for us and we are informed of any new development. It's i think its £8 to join I just hope you can

Love Jan

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Single membership is £10 for a year - everybody can read about membership here - lupusuk.org.uk/want-to-know...

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Hi as Janiceray says there are Lupus Support groups all over the country but if you can't make it to them or can't afford the £8 then there are loads of support groups on Facebook too including a Lupus Uk page which are all very helpful and empathetic. Hope you find something to suit you somewhere

LV Cathy

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Hi I have set up a support group in Greenwich for lupus and Fibromyalgia anyonr can attend, Lots oh exciting things planned, would love your help if you are near x

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Hi there,

I am from Farnborough...

It would be great if there are support groups nearby , where I live..:)

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I'm sure there are, im trying to get a little local meet up going in the Kent area if youre interested and it's not too far for you let me know x

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Hi

I am interested in joining the support group .I live in the Dartford area

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Hi Tyrone, that's great youre local and you're more than welcome to join us its only a small group so far but ill be in touch soon about locations and times x

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Hi cheeseyquaver, its lillylou from welling. would love to join a local group and would be happy to help.

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