[mooks]

I'm not sure if many of you were aware or took part in the lupus research organised by Angie(st thoms) and Daisy Barnes(runway research)that took place recently but i just thought id update you all on it as i took part.
Last thursday i went to london to see the presentation they had made after all their research and it was excellent, i met lots of other "lupies" and the presentation was perfect. The research was not so much about the medical side of the illness but about the emotional side. how it effects day to day life, how it makes you feel ect. it was such a great presentation and we all just sat there feeling like at last someone understood us! Daisy and her collegues intend to do several things with the research. Firstly they are going to set up a new magazine style website in association with st thoms that will be entirely about the emotional side of the illness. Secondly they are going to take their presentation to the top bods, ie house of commons ect and campaigne for more awareness (with the intention of the average person on the street knowing what lupus is) and to get better facilities within the nhs for lupies..the plan is to have centers like louise coote across the country and for every lupus patient to have three points of contact at all times-a specialist(ie rheumy), a lupus nurse, and a pyschologist type person for coping with the emotional elements of diagnoses and living with the illness.
I am so impressed with the work they are doing and i really wish them every success...i wanted to share this with everyone so especially lupies in the uk know that someone out there is fighting for us!!!!
cheers for reading i know its a long one!xxxxxxxxx

 

[karen.w.]

Hi mooks

That sounds wonderful!:woohoo: very impressive!!

well done to you for taking part mooks & making a difference....I'm glad to hear you enjoyed yourself too.

It's a step in the right direction & nice to know lupus is being taken more seriously.
thank you for sharing this
best wishes...karen x

 

[anna from nottingham]

Hi Mooks

thanks for letting us know how it went and pleased to hear that it all went really well, i would have liked to have gone and wish i had now!

i think they said they will have another presentation later in the year so i will try to go to that one! i have never met anyone else with lupus before in person!

love annaxxx

 

[Christine UK]

How wonderful...

is there anywhere at the min on the web we can read about this ?

xx

 

[LolaLola]

I would love to see this happen but is there an implementation date yet?
Well done for going.
x Lola

 

[LoopyLoo]

Thanks for posting this Mooks. They are a wonderful team at St. Thomas and do fantastic work.

Kudos to you for taking part. :foryou:

Hugz,

Pam xxx

 

[mooks]

its all very much a work in progress so they havent given any time scales or anything yet. they are just going to see what they can do. i dont think anything is published on the net yet but as soon as it is i will let you all know x