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LUPUS UK
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One can only dream...

It's too bad doctors are so busy and don't have much time on their hands to join a lupus support group for the purpose of learning what their patients are actually going through. Too many of them don't know much about lupus. They sure could learn a lot from us. They could consider it "furthering their education". We have so much firsthand knowledge from experience with lupus that since most doctors are too busy and don't have time to really "hear" us, maybe seeing it in print with their own eyes when they aren't being rushed on to the next patient would help.

Don't get me wrong. I do appreciate doctors and their place in this world. They are healers. I also know that they aren't specialists (like a rheumatologist), but wouldn't it be nice if just one wanted to learn more from us patients? Aaah, one can only dream.....

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Fully agree, a definate dream, maybe if we all tell our GP's about this site one of them somewhere might decide to have a lokk

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Wouldn't that be nice lupydragon if one of our GP's did look... I think if I mentioned this to my GP she might get offended, then again you won't know until you try. I'm going to bring this up to her at my next appointment. I can plant the seed, but I can't make her water it...

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Totally agree, however I think most gp's are frightened of lupus as they are so ignorant of the route it can take, my gp whatever i go to see him about...hums and hars!!!!then tells me to speak tp my rheummy about it, I have given up and now go direct to either the rheumatolgy nurse or consultant.

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Hi Jani. My GP is the same as yours. She didn't know anything about lupus. My rheumy told me to see my GP for any problems between my visits with her /rheumy, so I did. When I visited my GP with a health complaint she got nervous and asked me why I didn't see my rheumy instead. I told her/GP that my rheumy told me to see her/GP. She tried to help me despite her lack of lupus knowledge and then told me to see my rheumy in the future for lupus related health problems. Next time I saw my rheumy she asked why I didn't just go to my GP. I told her/rheumy that I did, but I got the impression my GP didn't know much about lupus or what specific blood tests to order, when she (GP) asked why I didn't see my rheumy instead. At that point my rheumy told me to just come to see her in the future. Sounds pretty confusing and somewhat amusing, huh? Yet at the same time I was perturbed by this experience.

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Hi my GP always tells me she feels awful not being able to help me and admits she hasn't a clue where to start with lupus patients, she also told me her sister inlaw has lupus. I feel bad going asking for help at times and try not to 'bother' her. Its the catch 22 I guess in Northumberland we don't have many rheumy Dr's and even getting an appointment for a check on meds can take months to get., ie I was due to see the rheumy in March got my letter saying ring for appointment which I did and they said first appointment I could get was September this year.I contacted help line said I was having problems and GP was unable to help I was then told an appointment would be sent out for a couple weeks time only to get a letter saying I would now be seen in June. I cannot help but think what.s the point I have told them both if things aren't sorted soon I will come off the meds and take the risks as if this illness was so bad we wouldn't be left 'to get on with it'

Sorry for the moan

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Hi Luupysue. I like that your GP's ego doesn't prevent her from admitting that she doesn't know anything about lupus. Hopefully having a sister-in-law with lupus will give her a better understanding of the illness. That's terrible that you have to wait so long for an appointment. I understand how you feel about considering just not taking your meds anymore. I'd probably feel the same way if I were in your shoes, but we know better than they do that if you want a better quality of life with lupus, medications are a requirement. We are the ones that have to suffer with an illness most doctors know nothing about. Hang in there and don't give up. Moan all you want because this is the place for it.

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Your lucky if your rheumatologist knows about Lupus because the 3 I have seen don't so I don't even get help from them.

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Hi custardpot. I do feel lucky that I found a rheumy that knows about lupus. I was very fortunate. I wish there were more like her in the world so all lupus patients could benefit from theirs. It's terrible that the 3 you've seen don't know much about lupus. I suspect my sister has lupus, too. She recently went to a rheumatologist to get checked, but the rheumy didn't know anything about lupus either. My sister feels so discouraged like most lupus sufferers are left feeling after a doctor visit. This needs to change.

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I think we need a lupus awareness month and make it compulsory Dr's attend and listen to suffers . Or we should all send links to the Dr's practice of this site and hopefully we will all get Dr's who are aware

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TODAY! NOW!

May 10th is World Lupus Day.

May is Lupus Awareness Month.

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May is only Lupus Awareness Month in the USA.

In the UK Lupus Awareness Month is in October.

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I am currently in the USA. Grounded with adrenal crisis. Uff da.

So ... I guess this year I get the benefit of 2 Lupus Awareness Months? May in USA and October in UK?!?

FABULOUS! The more the merrier. Bring it (lupus awareness) into the foreground.

Awareness = Research Imperative = Solutions

GO LUPUS GO.

(that sounds so very wrong ... ha!)

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luupysue and all, I quite agree with all of you.luupysue your suggestion I'm in support,GP's need more training in this area if not the medical aspect of it but the health promoting bit;listening and caring.

keep well all of you

Caroline

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I agree it is frustrating but in all fairness to GPs there are thousands of illnesses out there and they simply cannot know everything about all of them. In an ideal world it would be great, but like us they are only human. In the same way that a science teacher couldn't answer every scientific question ever. As long as they have a basic knowledge and can refer us to rheumys that do understand then we should be grateful. :)

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Up to a point, I agree with you. I worked for a Practice of 4 very busy GPsfor a number of years. They are absolutely bombarded with information on a daily basis, and so have to prioritise their time.... I set up a resource library, so they had a quick reference to agencies of help.

What a lot of us are frustrated by (as seen on this Blog site over and over again...) is when we are treated as hypochondriacs or "time wasters" by our own Practitioners - and they tend to treat symptoms separately, rather than holistically. Lupies often have several symptoms, all at the same time - and I sometimes feel embarrassed to mention them all on GP visits. One of our GPs (who I avoid seeing now) just tends to attribute most "ills" to advancing age - which is really annoying, as up until about 2 years ago, I was much more active and felt 15 years younger than my actual age.

GPs are paid to go on day courses - and I just wonder if there is going to be one for Lupus some time soon?

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