I've now seen the offensive Jeremy Vine show and I am livid. LUPUS UK SHOULD GET IN TOUCH WITH THEM AND AIR THEIR DISGUST!! XX

[jayniey]

We the undersigned are annoyed that Lupus is seen as only a minor irritation and that we are seen as a bunch of idle hypochondriacs. They should try a day walking in my slippers!

Jaynie. XX

[flutterby]

I actually thought it was reasonably good. I found that there were a few dubious points, the lady being interviewed talking about not getting colds, but that is her experience, and I know that I have joked about not getting colds in the past. I felt that the description of it as being the body fighting itself was quite good. I thought that the variety of symptoms was covered and the fact that every case is different. Mainly I thought that it brought some awareness about the condition, and did a reasonable job in a limited time, and I thought that the callers who phoned in brought something to the whiole thing. I don't think that it portrayed people with lupus as a bunch of idle hypocrits at all in my opinion.

[Chapter in reply to flutterby]

I agree with you flutterby.

[mstr in reply to flutterby]

I also thought it was very good. I particularly liked the lady who talked about how desperate she felt that she took herself to the hospital as she was in so much pain that she wanted to injure herself if she wasn't listened to. I think it is great that they raised awareness and so many people who didn't know anything about lupus will do so now. Therefore, other media will hopefully follow suit. I think even if I tried to explain the condition myself I might find it hard to get the condition across perfectly to others who do not understand.

It is a very good starting point I feel. On the contrary I think it demonstrated that it is a serious condition without putting the fear factor into anyone who has just been diagnosed. As we know even mild lupus/CTD brings with it debilitating fatigue/aches/pains/brain fog, infections and that is without any internal organ damage.

I think it was a good decision to cover lupus and if we criticise over small points then it will deter others from trying to raise awareness for fear of getting things slightly wrong. I think the theme should be lets raise awareness and talk about is so that if there are any misunderstandings it can be explained.

Good job done I say

[flutterby]

although it would have been good to have representation from Lupus UK to offer an additional insite. sorry pressed the button too soon! I do hope that you are feeling a bit better, take care x

[Hidden]

Flutterby, I agree. To do anything other than a 'shallow' treatment of lupus in the few minutes they had, on what is essentially a light entertainment radio station, would have been impossible. Given those limitations I thought they did a reasonable job. They managed to mention that 1 in 3 of us have kidney involvement - which is nothing if not serious, and I'm afraid I don't get colds either (my eldest son appeared at christmas coughing, sneezing and wheezing like an old man - and even after five days in close confines with his germs, I was fine, in spite of the heavy duty immunosuppressants I take.

But lupus is different for everyone - I know lots of people here suffer with all sorts of complications that I haven't experienced (thank goodness).

[beckside]

I too agree with flutterby when I listened to the programme this afternoon. As someone who is moderately affected by Lupus, I thought the programme gave a balanced view in the alloted time (approx 20 mins). Lupus is a complex condition and affects people in different ways ranging from mild to severe, this including the treatment and its effects were highlighted in the programme. I thought Jeremy Vine was quite empathetic and in no way did he or Dr Sarah Jarvis denigrate Lupus or those who have the disease.

[jamg3916]

It was covered in a reasonable way in the short time available...I think Kate Copstick was notthemost representative 'celeb' as she just gabble along and made light of it...not. Really all that helpful!

[katerowley in reply to jamg3916]

I agree i dont think she was the best role model, having had lupus 21 yrs, someone only has to sneeze by me and im in bed for 2 weeks, I just feel they didnt go into other factors that lupus can cause, i have been lucky with my kidneys only once did i have a problem and thats because i was taking tamiflu, but nothing was mentioned about circulation/vasculitis, or lymphoma which is common in lupus patients.

I no it can be scary, but i for one would prefer to no the truth, i was diagnosed with cancer in april 2012, and i was in surgery 4 weeks later, and my sisters had a lymphoma and facing radiotherapy.

[tiredmum]

Considering it was the first time that Lupus had been mentioned and for the short time available I didn't think their discussion was too bad. I did think it was made out to be less severe than it actually is.

I thought it was brilliant how they pointed out that people look well even though they are really suffering inside and that it can take a very long time to be diagnosed.

I do think think they could have made a better choice of guest speaker though as the lady on there gave me the impression that once diagnosed every thing is hunky dory and life is wonderful - maybe for her but certainly not for the majority of us.

I am one of those people that even while taking steroids and immunosuppresants i can be in close contact with someone who has a cold and 99% of the time I don't catch it. however that 1% absolutely knocks me for six.

On the whole I think it was a very good start in making people aware of Lupus considering my doctors receptionist has never heard of it!!!

[katerowley]

I think it was good and not so good, its good lupus is actually now being talked about, because im on the work programme, and i had a row with the manager, who labelled me a stay at home scrounger who didnt want a job which clearly showed her ignorance.

but i felt if i was listening to this with no experience of lupus, that once your on your medication, your fine, get back on with your life, it was even stated that most people carry on to have a normal life, my life is nothing near normal.

nothing was mentioned that some of the medication affects your eyes and you will evenutally need laser surgery, im just reaching that stage now, my circulation is getting worse to the point i find it difficult to stand all day, i would like to have seen mentioned the skeletal muscle problem that you get, mine is mostly round my ribs i only new i had it when i was taken to hospital in extreme pain.

Lupus should not be taken lightly, and i think the programme could have put it over better just how bad it is, and i dont think the woman did it any favours what so ever, maybe she hasnt had it that long, but a lot of us have, and my doctors told me its highly unlikely i would be able to hold a job down for a long period, hardly sounds like a normal life to me.

[jamg3916 in reply to katerowley]

Totally agree the Lupus patient Kate Copstick did the illness no favours the fallout from medication etc and organ involvement is not to be taken lightly...

[katerowley]

well the one thing that sticks in my mind at the moment is those of us that cant work and the government cutbacks, its just giving the impression that lupus and its associated illnesses are nothing, and you can lead a normal life.

this is the attitude i have had for the last 2 years, and ive lost count the amount of doctors letters i have had to request to prove my innocence against the slanderous allegations.

[jayniey in reply to katerowley]

I'm glad that it has started a discussion. Me personally, my digestive system is out of order, my eyes are a mess, I've got heart and lung problems, not to mention joints, skin (which breaks open regularly), etc., and the pain is out of this world. I've been stuck in front of a shrink without a by your leave who declared me sane (mind you he was as nutty as a fruitcake). And now thanks to my rheumy I am being taken seriously. Bless her cotton socks! J. XX

[field]

I didnt see the show, however I do often find when I come across articles written about lupus it always gives the impression that lupus is a fairly mild disease and even for those for whom it is not, once on medication they are ok and can live a normal life. That flares are intermittent with very long periods between flares and relapses where a sufferer is very well and can go about their normal and daily lives. I think that this may be the case for some lupus sufferers, however, there are many who are affected tremendously by this disease. There are those who are struggling to hold down a job and some who find it difficult even to get on with basic things in life such as washing, food preparation, getting out and have an inability to work because their symptoms are so overwhelming most of the time. when they get a little break from the illness it is a very short break of maybe feeling ok for a day or two and then everything gets bad again. If they go a bit mad in those few good days because they are sooo happy to have a bit of energy, they pay for it for days and weeks afterwards. I find those struggles are not often highlighted and hence the reason I think most people believe that Lupus is a mild disease and well controled by medication. It also does't help that Lupus sufferers look well when we feel like crap.

[Purpletop in reply to field]

I agree, I remember when I was diagnosed few months ago I read the NHS summary of lupus online and i thought 'I can do this' and I was getting increasingly irritated with my rheumatologist when after 6 weeks from seeing him for the first time I was not well. Little did I know... Now, 5 months down the line and I'm happy if I have a day with manageable pain, if I can breathe and if I don't have too much numbness in my arms, let alone have no symptoms at all. Nowhere online, other than on this forum, had I found sufficient material that highlights what this illness is really about, it is so disappointing.

[Hidden]

I dont think the lupus patient really did herself or us any justice. I think she tried to make light of the illness, which actually is quite a good attitude to have. However I know at times I feel absolutely desperate, I have long periods where I cant care for myself, many many frustrating hospital visits and at times am absolutely terrified by all of the complications. I dont think that this side of Lupus was put over well enough.

However I suppose she was asked for her views and how she is affected.

I thought the callers at the end were the best and most informative part.

x

[Sher78]

In all honesty, speaking as some1 who has displayed symptoms of SLE since birth & being diagnosed 19 years now I found the interviewee 'glossed over' the condition.

Admittedly, when the lupus is 'behaving' itself, my immune system is pretty decent but considering that this is a degenerative condition, & the fact that the longer u have it, the less the lupus seems 2 'behave' she was a very poor choice 2 actually speak about the condition. The problem is, there r so many people who get diagnosed & just want 2 come across as being 'strong' & able 2 cope with anything life throws at them & I think if we're all honest, we're all guilty of putting on a brave face & not being totally honest about how we feel at 1 time or another, which ok, if that's a person's way of coping with it, so b it, but going on a national radio station & doing this does not exactly do any good in raising awareness of how thee condition can actually affect us.