Went to my first Lupus Group meeting.: I went to my... - LUPUS UK


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Went to my first Lupus Group meeting.

T3KAO profile image
16 Replies

I went to my first Lupus group meeting last saturday, it was held at a local garden centre I was slightly apprehensive as to what it would be like! We sat in the Sunshine Cafe and awaited for people to start arriving. I thought they will all be sitting together and keeping themselves to themselves, I was frightened to go over and speak to anyone!! how silly was I, they welcomed me with open arms and I made 2 great friends straight away. I could have sat and chatted for hours and hours. I'm sure I would have made more friends had we had the time, and am very much looking forward to the next meeting and seeing them all again. They also made my husband and daughter feel welcome as well, which made me feel extremely proud as my daughter who is 14 sometimes worries about what is happening to me and she was able to ask some questions as well. Just wanted to say if anyone newly diagnosed, like myself, and is thinking of joining a local group then my advice would be go for it. The Cambridgeshire Lupus Group were amazing and I just wanted to say "Thank You".

16 Replies
janiceray profile image

There are lots of Lupus groups around that hold these Coffee and Chat.I from South Wales we had a coffee and chat Wednesday, and we have them on a regular basis and try and cover South Wales,and its good to meet other people and you can be yourself no hiding behind the face.but we also encourage other Lupus people to do it in their area and offer them support to do it.

You can get a list from Lupus U/K of Groups in your area.go on do it you will be amazed at how many new friends you make,yes you are shy at first and some times no one turns up but you go on, and try another day just like South Wales did we went from 2 to 9,you can let Paul Know at Lupus U/k and he will put it on facebook for you and you can use this site to do the same,It spreads the word,(we have lupus balloons so people can see where we are )

I am so glad that you went now we have to encourage others to do the same.

kayxn profile image
kayxn in reply to janiceray

hi janiceray its nice 2 know there is one in south wales i have been looking for 0ne around my area and surrounding arears but no luck so far, thanks 4 the info i will try again,i live in the margam area

janiceray profile image
janiceray in reply to kayxn

we are trying to do 1 near your area can i ask are you a member of Lupus U/K if so you will get to know what's going on with Lupus and with what's going on in South Wales,If not give me your e-mail and i will let you know



uzi41 profile image

I would love to go to one...southwest london..I know they met up recently in central london, I find it quite dufficult to get up there... I am im wimbledom anyone interesred would be good.

T3KAO its the first one that is difficult, glad u had a good time... Uzi..xxx

Paul_Howard profile image
Paul_HowardPartner in reply to uzi41

The South London group meets in Croydon on a regular basis. Perhaps this would be a little bit closer to you? Would you like me to send you contact details?

uzi41 profile image
uzi41 in reply to Paul_Howard

Thanx Paul

Paul_Howard profile image
Paul_HowardPartner in reply to uzi41

I've edited you comment to remove your personal details. I'll send you a private message with who you should contact.

uzi41 profile image
uzi41 in reply to Paul_Howard

Ok sorry..x

LynnHall profile image

There used to be a lupus support group at Hammersmith Hospital in West London, which was well attended for a while. But then people just stopped coming and those of us who were involved in organising it couldn't get any feedback, despite a newsletter being issued quarterly. Eventually, it folded, which was a shame. I for one, would love to attnd another in West London if there are any.

sebitha profile image
sebitha in reply to LynnHall

Hello Lynn

I'm in West London and had my first meeting in the central group last Saturday. It was great. We met in Leicester Square. Is that manageable for you?

I have my appt.s at Hammersmith Hospital, I assume you do too?

LynnHall profile image
LynnHall in reply to sebitha

Hi, Sebitha.

It's good to hear that you're getting support and enjoying the group that met in Leicester Sq. I can't really travel into London, as parking is limited and the Underground involves a lot of walking,which causes a whole lot of discomfort for me. So, many thanks, but I'm looking for a group that meets where there is plenty of parking and not much travel involved.

sebitha profile image
sebitha in reply to LynnHall

Morning Lynn

That's a shame.

Hopefully something closer to home will happen.

davinafrost profile image

Hi, really pleased to hear that you went to the meeting last Saturday. Unfortunately I had a nasty chest infection which I was having trouble shifting. The Cambs group is a success largely due to Shelagh Cheesman. She works very hard to organise meetings and write newsletters, campaign for Lupus sufferers generally. I'm sure she would be delighted to hear from you if you could help at all. She really does do wonderful work and even more so as she suffers with Lupus too! I really hope to meet you a the next meeting!

Phantom2 profile image

Congrats and well done, glad it helped you. Sheilgh does a fantastic job of organising her group. By the way, if you know anyone in Suffolk that wants to talk, I am the lead for the Suffolk Lupus Group. Please check out our website @ suffolklupusgroup.org for meeting details.

Tamsin profile image

Hi- if anyone wants to meet up in Dorset, I'm on the committee there. We are actually struggling to get people interested in meeting up- so if you know anyone in this area who wants to meet up then please ask them to get in touch tamsin@dorsetlupus.com. Shelagh is lovely and will make you feel v welcome. X

Paul_Howard profile image
Paul_HowardPartner in reply to Tamsin

Hi Tamsin,

Let me know if you ever want an announcement on the main LUPUS UK Facebook page to invite people along to something.

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