National radio awareness of Lupus

[fabwheelie]

Lupus awareness got some air time on UK Radio 2 today.

Here's the link to the programme on iplayer it starts about 1:08 hrs in bbc.co.uk/programmes/b01pmd35

Pity the did not mention the chartity Lupus UK lupusuk.org.uk/

[flutterby]

Thank you for the link

I half heard it while at work, would be good to listen to it properly. x

[Needmorehours]

Wow its was like listening to myself describing this illness! Really worth a listen - well done Radio 2!

[cloggy73]

Well worth listening to! Thanks for the heads up. Friends of mine heard it on the Radio as well and for once it seems to be sinking in a bit, especially the bit about "looking well but feeling terrible" Do pass it on to friends and family. We need much more of this kind of recognition as still so many people know little if anything at all about Lupus.

Night,

M

[Jaxqueline]

Thanks for posting this. I only caught bits of it but thought it was a wonderful exposure. I just hope that non-lupies listened to it! I was curious about the comment that we were immune to colds etc, I wasn't aware of that. Thanks.

[willow80]

I heard the broadcast and was also surprised that we were immune to colds (I used to get cold after cold along with sore throats when working with children, these took ages to clear), however I have read that as many of us are treated with prednisolone, this can increase the risk of colds and other infections.

Many of us are also given the flu vaccination, so thought, if we are immune, why bother giving it us? Very strange!

[Paul_Howard Partner LUPUS UK in reply to willow80]

Lupus patients are not immune to colds. Very occasionally somebody may be lucky enough to not pick up infections very often, however, as a general rule, lupus patients tend to be more prone to catching viruses and experience them more severely than those without lupus.

[Maya23 in reply to Paul_Howard]

Yes that is certainly my experience, my family had the stomach virus in december, getting ill for just 24 hours, I however had it for nearly 3 weeks and lost so much weight I looked like a stick..luckily over christmas I was able to put a bit of weight back on!!

Thanks for posting

[EOLHPC]

Yes: i feel those comments on colds & infections were a bit simplistic. But tht's ok i guess: we all know how complicated lupus is and there wasn't enough time for tht radio pot to cover everything....anyway, I know I'm not the only one who gets infections which are often more aggressive and persistent than in someone who hasn't got lupus. My rheumy has confirmed that yes this predisposition can exist in us, even when we aren't on steroids or chemo. The USA lupus specialist Wallace explains why our suspetibility to infection is unusual on pages 234-5 of 'the lupus book' (I got my 4th edition copy from the lupus uk website). The reason, he says, as I understand it, is mainly to do with our white blood cell neutrophils being compromised + our infection fighting complement components are compromised + our cytokines are disfunctional.. Hmmmmm. Still trying to get my head around this....but really he does his best to give a clear concise explaination of why some of us are very infection prone. And I bet there are many other sources of good info about this susceptibility

[Flippityfish]

Thanks for the heads up. It's good to get some nationwide coverage on this condition which so many people do not know about!

[Nightjar]

When my lupus is active, I don't seem to catch colds, even though a family member have it. At other times, when I do get a cold, it tends to linger on for weeks on end! (I'm not on immune-suppressants.) To be on the safe side, I make sure to keep my hands clean (good old soap & water!). I don't use anti-bacterial or other harsh chemicals on my body, or in the house, as I think they make bugs stronger ..and me weaker! I have e-mailed the link to everybody I know - thought some good info about lupus. xx