BBC 1

[schnauzersmudge]

I thought the interview Jane Dunnage gave on the BBC 1 this morning (Tuesday 14/05/13) about the problems Lupus patients have when using the NHS was brilliant!

[marypw]

Especially the bit about telling your 'story' over and over and over again! xx

[schnauzersmudge in reply to marypw]

EXACTLY!!!!!

[gazzasoens]

what programme was it on. thanx

[schnauzersmudge in reply to gazzasoens]

I'm sorry I have tried to get a link for this interview but cannot find one. Perhaps there is someone out there who can help? It would be a shame if we cannot see it.

[caninecrazy]

can I rewatch it on bbc iplayer please? (sorry not up to speed with technology terms) missed it too x

[John_Mills]

Does anyone have the link please so we can watch the programme again. I have tried to find it but cannot.

thank you

Susan (Mills)

[schnauzersmudge in reply to John_Mills]

Sorry Susan it looks like the interview cannot been seen. I have tried to find a way to see it again but can't find a way at the moment. Will ask my husband when he gets home later. Wll of course let you know if I can.

[charm81]

What is the name of the program? What time was it on?

[schnauzersmudge in reply to charm81]

The interview was on BBC Breakfast this morning Tuesday 14th May.

[pattismith]

Seems that because the program goes out live, you are not able to watch it on Iplayer, such a shame didn't know it was on and only thinking a while ago we could do with going on a program like that - must be a way we can all get to watch it somehow ?

[luupysue]

If anyone finds a way to view the program can they plz let us all know I ve had a few people ring and ask ifI've seen it

[charm81]

news.bbc.co.uk/1/hi/health/...

This link was on BBC website. No footage though.

[Nightjar]

MIssed it, as didn't know about it beforehand...

[pattismith]

Going to try and get in touch with the programme makers and see if there is a way we can get hold of the session to watch it and put it online, will keep you posted of any progress

[vonnyrad]

Thanks to charm81 for providing the link to the BBC news website.Interesting to hear about this new gene discovery (even if I did miss the Breakfast programme!), I was disappointed not to hear more about lupus in the media on May 10th (World Lupus Day)though, didn't seem to be anything either on television or radio programmes .I am so convinced there is more than just a 'slight' genetic link, as I was told 30 years ago in the early days of my illness. I am now fairly sure my mother suffered from it and died at the age of 49 in 1982, when I was 21 and just as I was being investigated in hospital for the first time after 3-4 years of 'mystery' symptoms.Thinking back to various problems she'd had with her health over the years,I feel so sure she did have lupus or something similar, but of course, she was never actually treated for lupus, I doubt if her doctors had even heard of it, never mind considered it. Now my daughter has similar 'mystery' symptoms to me, and is getting fobbed off by our GPs, who, because she is 23 tell her she is too young to have anything serious .Despite her telling them about my history,they refuse to investigate her properly.Instead she's been told she's suffering from stress and depression and been given anti-depressants.Doesn't seem that much has changed in 30 +years- I was told back in 1980 I was 'stressed' because I was studying too hard(I was at university but never one to work too hard!)and by the time I was taken seriously and sent for tests I only had 30% kidney function left and ended up on dialysis(amongst other things)If it is proven scientifically that there is a confirmed genetic link, then perhaps doctors would be more willing to consider lupus or similar auto-immune disorders a possibility when a patient with 'mystery' symptoms presents if there is a family history of auto-immune disease, just as they take notice of heart disease in families.

[Purpletop in reply to vonnyrad]

The point about scientists confirming a genetic link is not to show that lupus has a hereditary aspect (I.e. passed through family) but to show that it isn't caused by outside things, such as viruses or germs but by our own genetic makeup. The more the scientists know about what causes lupus, the better equipped they become at prevention and appropriate drug therapy. I'm sure there is research going on regarding the hereditary aspect but so far the scientific community doesn't see a link there, which means that the GPs are unlikely to take anyone seriously when mentioning family history at this point. It is frustrating to all of us to see how slowly the GP perception and training regarding lupus changes. It took me 2 years to get diagnosed whilst being fobbed off with the same 'you must be depressed' silliness.