πŸ‘‹πŸ‘‹πŸ‘‹πŸ‘‹BIG thank you to Lupus UK...: ...for our... - LUPUS UK

LUPUS UK
26,214 members β€’ 22,024 posts

πŸ‘‹πŸ‘‹πŸ‘‹πŸ‘‹BIG thank you to Lupus UK...

Barnclown
Barnclown
β€’37 Replies

...for our WONDERFUL East Anglia Lupus Information Day in Cambridge yesterday πŸŒŸπŸŒŸπŸŒŸπŸŒŸπŸ‘πŸ‘πŸ‘πŸ‘

It was GREAT to see Paul & Chris from LUK head office there along with 300 + good friends & newcomers, including some from other regions...and some with family & friends

Our expert speakers gave fascinating & thought provoking & helpful presentations...and just enough laughs too πŸ˜†

Our Cambridgeshire Lupus Group did a fantastic job of producing the whole shebang...Paul, Chris & co were ultra organised...the venue was superb...all vvvv impressive

Am sure i'm forgetting something...as am a bit whacko blotto after all that excitement πŸ˜‰

Anyway: THANK YOU all

😘😘😘😘 coco

37 Replies
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I also went to the meeting. Fantastic and very informative. I wished I could have met you and other members from the forum. Well done to the Cambridge ladies for a great day. Well done. Perhaps we can meet again

Barnclown
Barnclown
in reply to Daph39

I'm delighted to know you were there too πŸ‘‹πŸ‘‹πŸ‘‹πŸ‘‹πŸ‘πŸ‘πŸ‘πŸ‘let's meet at the next eventπŸ€πŸ€πŸ€πŸ€

How did you find out about it Coco? I wonder if they happen down my way too? It sounds great x

It was great! Am a member of the Cambridgeshire LUK support group so I get advance notice of regional events from our seasonal newsletter. And some events around the UK are advertised in the seasonal LUK News & Views magazine. Paul (Howard) posted a notice here on forum about Saturday's event in cambridge, offering tickets (which were free, but secured a seat - necessary because places were limited & these events have proven v popular over the years. So, look into your regional LUK group...there may be an event in planning as I tap this reply πŸ˜‰...and keep a look out for notices in your News & Views mag πŸ€πŸ€πŸ€πŸ€

Paul_Howard
Paul_HowardAdministrator
in reply to Fennella02

Hi Fennella02,

We post about our bigger events on this forum, our website, Facebook page and in our magazine. Our regional groups also organise a lot of meetings and events which they keep people aware of through emails and their newsletters. What area do you live in?

Hi Paul_Howard . Thank you for that info. I live in South Somerset, on the Devon border. I did try to join the Western LUK grouo earlier but received error messages.

Paul_Howard
Paul_HowardAdministrator
in reply to Fennella02

Hi Fennella02,

Unfortunately the Western group isn't very active at the moment as we haven't had many volunteers there. However, the Devon & Cornwall group has quite a few different meetings, some of which may be suitable for you? You can find out more about them at devonandcornwalllupusgroup....

Many thanks Paul. One of the meeting places is only 20 - 30 miles away which isn't all that far when you live in the countryside! I hope to attend the next one. Thank you for your help. Clare

Beautiful fleurs! πŸ’.

How wonderful to be able to gather with like minded...(afflicted) people.

Any morsels to share when whacko blotto passes, we await eagerly, our forum guru.

Bless

PM

🐚

Hi Penelope Mary

There might be articles in NEws and Views from the Info Day and also videos of the speakers on Lupus Uk's website given time.

I'm sure Barnclown will tell us more soon, when better recovered. Looking forward to it. Hope your well. X

Hi Misty! Thank you...will definitely have a look πŸ‘€.

Thank you for asking, so shall Ye be answered 😢, I am with flare and totally over it. Headache πŸ€• and fever πŸ€’ and all that goes with a flare πŸ’₯

But I feel πŸ˜„ to say this is a fellow sufferer, sharing lightens the load does it not?!

Good health and hugs πŸ€— to all

😍

PM

🌼

Hi pm

Sharing makes all the difference, stops us thinking we're alone!. It's why these info days are very helpful and important. Be as well as possible. X

πŸ€—πŸ‘πŸΌπŸ’š

Paul_Howard
Paul_HowardAdministrator
in reply to misty14

Hi misty14,

The speakers are usually very kind and do write articles for future editions of our magazine. The presentations were also recorded and I will post the videos on this forum when they are ready :)

Misty is right: the presentations were filmed...paul said the plan is to post the video on the LUK forum, I think. πŸŒ»πŸŽƒπŸŒ°πŸπŸ€πŸ˜˜

Oh excellent Coco....shall anticipate with yearning 😘

xxoo

Paul_Howard
Paul_HowardAdministrator
in reply to Barnclown

That's correct. As soon as the videos are available we will post them on the LUPUS UK website and here :)

Hi Barnclown

Glad the Information Day was so good and helpful. Looking forward to hearing more about the subjects covered. Glad it was worth your superhuman effort in going!. Lupus Uk do a great job!.

Recover soon. Take CareX

Barnclown
Barnclown
in reply to misty14

I can't find a superwoman emoji, so πŸ’ƒπŸ’ƒπŸ’ƒπŸ’ƒ. Yes, the effort was DEFINITELY worthwhile...I don't regret having to hunker down this week to recover. the morale boost we get from the powerful positive feelings generated by a conference room full of empowered proactive patients, family, friends, medics, researchers & LUK staff is FANTASTIC: amongst the BEST & longest lasting treatments ever...these big events don't happen every year...in between I make a point of attending our annual Cambridgeshire support group AGM for a top up of good vibes, and, when I can, our coffee & chat mornings. The rest of the time I make sure to come here for the wonderful friendship, solidarity, info sharing & fun that make our forum one of the vvvvvv greatest 😘😘😘😘 πŸŒŸπŸŒŸπŸŒŸπŸŒŸπŸ‘πŸ‘πŸ‘πŸ‘

πŸ‹πŸΌβ€β™€οΈ 😘😘😘😘😘😘

πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜πŸ‘ŒπŸ’ͺ

misty14
misty14
in reply to Barnclown

Hi Barnclown

Wish I could go to our area's Info Day but it's too far away, S. Devon and I'm in the North. Hard having to cover a big area!. Can imagine it makes you feel very empowered and inspired. What subjects were covered?. Thank you for keeping us updated on all matters auto-immune. X

Barnclown
Barnclown
in reply to misty14

The travelling is tough...as I drove the hour home in the dark, being ultra cautious cause I was v tired, I wondered how much longer I'd be able to make these events by driving myself. I thought: thank goodness for videos on the LUK website...for this forum...for the LUK News & Views mag...for my regional support group & its newsletter... πŸ€” and then I thought: somehow I'd find a way to keep attending these big events (e.g. share a hired car with LUK contact in my area...there has to be a way, where there's a will πŸ˜†). It's so important to me that I feel connected with you all...

It's so GRRRREAT that LUK posts videos of these events on the website πŸŒŸπŸŒŸπŸŒŸπŸŒŸπŸ‘πŸ‘πŸ‘πŸ‘

Gotta go now, but will add a bit about the presentations ASAP

πŸŒ»πŸŽƒπŸ€πŸ˜˜

Paul_Howard
Paul_HowardAdministrator
in reply to misty14

Hi misty14,

I'm sorry that you're unable to attend the Devon & Cornwall group info days. They do also have more informal meetings around the counties which may be more accessible to you? You can find out about them at devonandcornwalllupusgroup....

Fennella02
Fennella02
in reply to misty14

Hi Misty. It occurred to me that perhaps you attend the coffee mornings at Bickleigh Mill? I can probably attend the next one - I shall certainly try!

misty14
misty14
in reply to Fennella02

Hi clareb

No I don't attend the Bickleigh Mill coffee mornings, still too far for me. I live in Barnstaple.Lovely thought though.X

It was a fantastic day, thank you for all the hard work put in by the Cambridgeshire group and the Lupus UK team in Romford.

The next big event will be in Winchester in May 2017. Look out for those tickets.

Best wishes

Kevin Weston

Barnclown
Barnclown
in reply to Kevin53

YAY πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘«πŸ‘­πŸ‘«πŸ‘«πŸ‘«πŸ‘­πŸ‘«πŸŒŸβ€οΈ

Coco,

I always enjoy your posts, even when you are a bit whacko blotto! 😊

Lorelei

Barnclown
Barnclown
in reply to Lorelei

πŸ˜†πŸ˜†πŸ˜†πŸ˜†πŸ˜˜πŸ˜˜πŸ˜˜πŸ˜˜

Paul_Howard
Paul_HowardAdministrator

Hi Barnclown,

I'm so glad to hear that you enjoyed the event and found the presentations interesting and helpful. It was lovely to see your smiley face again :)

The Cambridgeshire Lupus Group did an exceptional job in organising the event and were very helpful and accommodating on the day so I really want to thank them.

It was also really excellent to see so many people being proactive about their health, learning more about lupus and having a chance to meet and chat with others.

πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ˜ŠπŸ˜ŠπŸ˜ŠπŸ˜Š

Ok folks: some details as promised πŸ˜‰

the presentations at this event were by expert medical speakers from Addenbrooke’s Hospital, Cambridge

Dr Frances Hall - Consultant Rheumatologist:

Lupus - what you can do to take control

Dr Thomas Hiemstra - Director, Patient Led Research Hub:

Patient Led Research Hub & it's activities

Dr Lisa Wilcox - of the Vasculitis and SLE Service:

Why kidneys matter in lupus

Dr Natasha Jordan – Consultant Rheumatologist:

Fatigue in lupus - causes & management

Followed by a question and answer session with Dr Hall, Dr Wilcox & our Lupus Specialist Nurse Jane Hollis: the audience submitted their questions in writing during the refreshment break

The whole thing was fascinating, encouraging & empowering...you could feel the most fantastic buzz filling the auditorium πŸ˜†πŸ‘πŸŒŸ...and even though I was lucky enough to be able to attend, I'm planning to watch the video once it's on the LUK website: I just can't get enough of a good thing 😍

πŸ€πŸ€πŸ€πŸ€ coco

I'm so sorry I missed this. We were actually in Cambridge visiting friends! What a coincidence! It's a 6 hour drive from us and we don't visit often! It's good to hear that it was such a success. X

Barnclown
Barnclown
in reply to Wendy39

Hope you had a lovely time...the weather was lovely here! Such a coincidence! πŸŒ»πŸ€πŸ˜˜

Wendy39
Wendy39
in reply to Barnclown

The weather was perfect! We had a great time, thank you but I've been paying for it since, hips, back, neck and today a corker of a headache. But it was worth it. X

Barnclown
Barnclown
in reply to Wendy39

Me too...spent the whole afternoon on the sofa....and it was definitely worth it πŸ‘πŸ˜˜

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