Lupus information day: Just wanted to say how much... - LUPUS UK


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Lupus information day

joannebond360 profile image

Just wanted to say how much I enjoyed the lupus information day yesterday. Was absolutely brilliant. So much information. Learnt a lot about excersise. Before diagnosis I was always at the gym but since been too scared to do any. Going to start this week with some gentle excersise and the relaxation techniques were fantastic! Thank you lupus uk for a wonderful day :)

13 Replies

So right, joannebond!

Looking around the huge conference centre auditorium (a beautiful contemporary space), it seemed to me that everyone in the close to 300-strong audience enjoyed and benefitted from the presentations. Many of us, I think came from the East Anglian region, but I met a lovely young couple from Leeds

HUGE Congratulations & thank yous to Shelagh of our Cambridge lupus uk support group, and to all the other wonderful people who organised the conference, and to each of the truly totally Ab Fab speakers who I gotta say were simply the best!

There were so many wonderful things about this information day, but maybe one of the very most important things for me, was that it started at 1:30 pm which meant I could go gently getting ready in the morning to set off on the 1 hour drive to Cambridge, and still get there early enough to snag a great seat. And this meant I felt fresh enough, with cognitive impairment etc relatively low enough, haha, to have the energy to focus on taking in as much as poss of the presentation's fascinating, enlightening and even humourous presentations. AND the programme ended on time at 5 pm: major achievement!!!!! Which meant I wasn't too exhausted to do the drive home safely. half day conferences seem to me THE way to go for those like us who need to pace ourselves & ration activity so cautiously.

I can't say enough thanks to all involved....the last Cambridge conference 2 years ago was wonderful...hoping v much there will be another before too long!

PS. Would be v glad if someone from lupus uk would let us know if a DVD of the presentations really will be available and....when. The conference was being filmed, and mention was made of a DVD....I know several who would v much like to see a DVD....myself included, + my husband, my sister in Philadelphia, a lupus friend in southern England....

Paul_Howard profile image
Paul_HowardAdministrator in reply to Barnclown

Hi Barnclown,

The presentations were filmed. As of yet, I don't know what the plan is exactly for the video footage, but I will have a word with our Director when he is in the office tomorrow and I will let you all know in due course :)

Thanks Paul - good news

ursi profile image
ursi in reply to Paul_Howard

Good news for those of us who couldn't attend :)

I too pass on my grateful thanks to all those involved with making the Lupus Awareness day happen, and special thanks to Shelagh, as ever superbly organised, and the venue, amazing. My friend who accompanied me said she had absolutely no idea of the complexity and far reaching symptoms of Lupus and had a whole new respect of me on just being able to put one foot in front of the other, so the event for her did its job, made her aware.

Said hello to so many people yesterday from here, but sorry, brain fog does not have me remember your online handles, but it was nice meeting you all.

Didn't know anything about it being on ?

Thanks for a great afternoon, found it very informative, it really help make sense of this of this very complex disease. Thanks to everyone who gave their time and energy in making it very successful. ♡

Yep the lupus information day was awsum so much information, I learnt so much nw things ad meet some lovely people that really did understand what lupus was about, I'm so glad I traveled so far out was worth the trip it's was grate enjoyed it loads ;)

And thank you to all the people and lupus uk on holding the information day, it was defo appreciate ;) thank you

LupusAdmin3 profile image
LupusAdmin3LUPUS UK

That's great to hear joannebond360, really pleased you found it helpful. Let us know what techniques work for you :)

Hi Hayley. Will do. Found it all so positive and encouraging.

Jo :)

Yes, very informative and interesting as usual - and particularly timely for me as I had my outpatients appointment with rheumatologist this morning and reflecting on the information meant I could give a very clear story of how I've been over the past few months. btw, I've agreed that as my disease is fairly quiet at the moment (lucky me, I wish the same for all of you) I will have my next appointment in 18 months time, by telephone! But I'm still in the system so can call anytime if things change - suits me fine.

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