I never saw the Jeremy Vine show and I currently have flu and a bad chest infection. I'd have been going apes**t at the tv if I had

[jayniey]

It was obviously put on by a bunch of no nothings that couldn't be bothered to do the research and get their facts right. It makes me so mad and makes us look like a bunch of hypochodriacs. All they needed was a spokesperson from Lupus UK. XX

[Purpletop]

I was about to post something similar regarding the way lupus was described - it sounded very much like a joint pain here and there and some pleurisy but all happening to a very small percentage of the population.

I was disappointed to hear it. We all know that lupus is much more than that. A no point there was any description of the daily array of symptoms we get that we have to somehow cope with, or the seriousness of its complications, or the balancing act we each have to do when deciding whether to take another drug or increase the dosage agains side effects. Nothing about the days spent on bed because of the unbearable pain, nothing about the inability to get outside the house for fear of collapse due to dizziness or seizures, nothing about the despair we all feel from time to time in fighting this, or the anxiety when a flare hits, or the tears spent on the loss of hair, nails, teeth, skin quality and everything that could at least make us feel half human when everything inside is hurting.

But, this shows a growing awareness of the illness and hopefully there will be more program's like this soon.

[jayniey in reply to Purpletop]

Lupus is a dreadful disease and when I have the dubious pleasure?to add in Marfan syndrome and a Ehlers Danlos syndrome which is what I have, you get some of the strangest nasty symptoms (which I am obviously imagining) you start to think that you're going bats! I agree with everything you say. Lifes a bitch then you die!! Keep your pecker up and remember Harvey and Rabbit. FRIENDS. Take care all. XX

[lucy-may]

I could not agree more with all you have said, Wish they could film us on a very bad flare, then maybe they would understand better.They never even mentioned the great saddness which comes with Lupus that you have to try and fight each day, to force yourself to try so hard to be as possitive as best you can. Thank goodness we have this site, l have never felt quite so alone since finding this site.x

[Hidden]

Hi, Ive been hearing nothing but good things about the show, so thought it was just me that thought it wasnt good!!

I thought the patient they had on was rather hyperactive and unfortunately didnt get her point across, I did think that the phone in comments from listeners were better than the actual main show. I was disappointed

[Jane-Martin]

Hi, I do not know anything about the show. I live in South Africa. But from what I hear it failed to get Lupus across well. I feel you should write to the producer/s, with copies to Jeremy Vine and tell them why you feel dissapointed and let down.

I think you should also send a copy to Lupus UK who might also feel strongly enough about it to at least ask why they were not contacted regarding the show. Jane xxx

[Jaxqueline]

I was actually just glad that it was some form of publicity. However, I was surprised when the interviewee (Editor of Erotic Review I think) said that she was probably immune to any flu germs. I haven't found that to be the case, has anyone else?

[Corrosion]

I agree with you Jaxqueline. We here about lupus in the media quite rarely but what this show did was to bring it more into the public view. I listen to the Jeremy Vine show everyday and the lady with lupus is someone you would expect to have on his show, Jeremy in my opinion is quit sanctimonious.

I shared the link with my family and when speaking with my brother I felt it helped him understand more about the disease and it has opened up a topic for us to discuss it further.

The lady with lupus is very lucky to be immune from any flu germs. Since having my diagnosis i've become quite obsessive with washing my hands, being hygienic and running away from people with coughs etc. The Doctor probably should have clarified this point because people will get the wrong idea that we don't get ill which is the whole point we should get across with lupus.

[Delila]

Although I agree the show could have researched better and the lady did seem to go off on a tangent somewhat I too rarely suffer from colds/flu and never seem to catch bugs that everyone I work with does! I, like the lady on the radio show seem to bypass all this, however I then get pneumonia or something really serious. Really strange as I'm always told to be wary when around people with colds etc

[katerowley]

As the doctor said on the show, it depends on your medication has to how it affects your immunity.