View Full Version : UK Lupus Patients

05-31-2005, 01:53 PM
Hello Everyone :) I was wondering if anyone from the UK has seen the "Living with Lupus" video? I know that Lupus UK, sells them. I was curious as to what you thought of it. Good, Bad, informative, sterile...what? My friend has been diagnosed with Lupus and I wanted to get ahold of it and view it. I thought it might give me a better understanding of it. Do you guys think there's enough info out there about Lupus? Take care everyone!

06-06-2005, 04:35 PM
Yes I have. I joined Lupus UK as I set up a support group, but after a dispute with a committee member. We decided to go alone as an independant group. Lupus UK refused us any documentation or information at all as we weren't giving all the money too them. We are now a thriving group heading for charity status in our own right. We are writing our own information cards from information on line. St Thomas Lupus Trust has a very good information site, worth a read. They have many information sheets. If you want the link pm me as I don't know if saysusie is happy about us putting links on site or not.
If I can help in any other way please let me know

06-07-2005, 09:45 AM
Hey Val :D
Thankyou for responding. So what did you think of the video? Was it helpful in any way? Was there anything about it you didnt like? What did you like about it. I heard it's a bit outdated.

What is the name of your group? Do you have a website address? I have seen looks at St. Thomas Lupus Trust site, they are quite thorough.

I hope you're doing well, take care and please respond soon.

06-07-2005, 11:50 PM
No it didn't inspire me. I think a new video would be a good idea. I have pm'd you
My group is
Lupus, Leicestershire and Rutland Support Group.
We are working towards charity status.

06-08-2005, 06:24 AM
Links to web sites are welcome here as long as they deal with lupus, its treatments, symptoms, medications, education etc. In fact, we have a forum specifically for them "Lupus Web Site Links"

Saysusie :lol:

06-08-2005, 04:05 PM
THanks Saysusie, just didn't want to offend. I will remember about links