What is Lupus never heard of it

This week i have had my eyes opened to the medical profession, to start with i was at the hospital on Wednesday and the doctor was asking me questions she asked if i had any other ailments i told her i had lupus and she said she had never heard of it although she came out of her residency this year,she said i will look it up tonight on the internet.

Secondly today i had to go to the hypertension clinic and the sister asked me about my tablets and why was i taking plaquenil again i had to explain they were for my lupus and guess what she asked me what lupus was, i came home and thought i lives in their hands and you know it makes you think, If the professionals don't know us lupies have no chance.

Just thought i would let you all know.

Lornadoon

6 Replies

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  • It took me 30 seconds to find this on the internet - not exactly a rare condition is it? Most GP surgeries have notice boards, perhaps we should ask that they pin up one of Lupus UK's leaflets, that would be a start. Hospitals would probably be less co-operative but maybe we should carry a leaflet and produce it the next time a medical professional asks what Lupus is.

    How common is Lupus?

    Until a few years ago there was very little information on how common lupus is in the UK. It was generally considered a rare disease, most general practitioners (GPs) only having one or two patients on their lists. However, studies done in the late 1980s and early 1980s have shown that lupus is more common then was realised, particularly in women. Results from the largest UK study in Birmingham showed that in a population of 1.2 million, there were 242 adult people known to have lupus and 33 new cases of lupus diagnosed in one year (1991; children were not studied). From these figures the prevalence and incidence rates for lupus (corrected for the age of the population) were calculated. The prevalence was 28 per 100,000, that is about one person in 3,500 has lupus. The incidence (new cases per year) was 3.8 per 100,000, that is about one person in 26,300 developed the disease that year. The previous results from the smaller cities of Nottingham and Leicester were very similar.

  • Hi grannyjogger you are right about carrying a leaflet about lupus as i have had to explain the condition to both a doctor and a nurse just in a couple of days.

    I do not normally talk about lupus as i know that most of the population are not aware of the condition, but it does seem that the medical profession are just as much in the dark.

    I have never seen anything in my doctors surgery about lupus and i have checked the board.

    Well thanks for your response

    Lornadoon

  • I know Shame on them Get some leaflets from H/O and leave around the Hospital.

  • So true. I'm currently unemployed because of my condition getting worse, and if I have to explain one more time at the Job Centre why I look okay bit still can't work, I'll go nuts!

  • Agreed, when I am feeling fine I am out and about looking healthy, no one knows that my lungs have fluid, I have a blocked artery to my kidney and my heart is so inflamed it forced an angiogram to prove nothing. They also dont know that I take 10 pills daily for a multitude of symptoms and each pill probably causes 10 more symptoms. I think I, too, should hand out some kind of pamphlet to explain the situation without emotion.

  • Hello Granny

    And those doctors who have heard of it often have not real understanding. When I told one at Crawlley hospital that I was querey lupus he said " Nah, I've seen people with lupus, you havent got it, you're much too healthy looking."

    A week later I got my diagnosis from St Thomas'.

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