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
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
