My sister in law is visiting from New Zealand. She ❤ loves statistics...and asked me how many people have lupus...I thought 🙄 DUH...and grabbed my iPad to google an answer. This CDC link is the best I've found so far...my sister in law seems satisfied with it, anyway 😉....even though its orientation is the USA. so here it is in case you're interested too
If anyone knows a good source of UK lupus stats: do tell 🤗...
🍀🍀🍀🍀 coco
Happy New Year Barnclown! Hope you enjoy your sister in laws visit 
And to you & yours too mrsmouse! Hope you're keeping cosy and feeling as well as poss 🍀😘🍀😘
Hi Barnclown ,
The UK stats for lupus incidence and prevalence have been notoriously difficult to obtain because there are very few registers. Some previous figures can be found in our factsheet here - lupusuk.org.uk/wp-content/u...
We have funded further studies fairly recently and we are just awaiting publication for some of the results. These will be used in due course to update our factsheet.
Hurrah: exactly what my SIL needs...am sending her your link! Many thanks, paul 😊
I was just about to say - ask Paul!
who has given you a patient-aimed article.
This is for healthcare professionals - and shows the disparity between the studies which make it all bit difficult. It is a harder read in some ways - but for a professional-aimed article a model of clarity!
lupusuk.org.uk/medical/gp-g...
GOSH: you & paul have combined to give me just the info I need: many thanks, 😊
Hello
Barnclown
Thank you for posting interesting info about the incidence of Lupus and starting an interesting debate as well. I hope your sister- in- law's visit is going well. We are all very real people behind our computer screens giving help and advice about lupus or other chronic illnesses because we are unlucky enough to be sufferers and have a wealth of experience to impart . We want to share this because we know what it's like to have our lives cruelly changed and as a result have made some very close , real friendships that will last for life. 😊
I'd be interested to know is lupus prevalent in New Zealand ?. Good luck for the rest of her visit. X
Thanks misty! Well said: I agree totally
Interesting question about NZ incidence...I don't know the answer: must google this.
Her visit is going well: she is fun to be with...and has stayed with us a lot over the years, so she knows how to fit in. Badger is v happy to see her. She is one who has thought I was a hypochondriac all these years...and has said things like: everyone has lupus! But this visit she seems more open minded and interested in actually understanding lupus better
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Hi Barnclown
Glad her visit is going well. Have you asked her if she's heard of lupus in NZ or read about it?. Glad she seems more open minded towards you. She's seeing all you have to do on a daily basis to cope!.X
Yes, she has heard of lupus in NZ...but her misconceptions are the typical sort we all encounter all the time in those around us.
Over the 30+ years my husband & I have been married, she has witnessed my multisystem debilitation increase. So she is well aware I've always been unwell, but, like almost everyone around me, she bought the NHS's view that my issues were mainly due to a childhood fall on head from height...and my supposed hypochondria (Grrrrr). So when my infancy lupus diagnosis was uncovered, she had the choice to begin to view everything she witnesssed in a very different light....this is a journey family members either do or don't choose to make when a relative is diagnosed...and we know all too well that not every family member decides to let go of prejudices....I know I'm in good company here: we all live with such family prejudices to some extent
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I was discussing this with my rheumy recently and he suggested it would be interesting if his lupus patients could all have some sort of ancestral DNA tests to see if there is a link to distant geographical history.
We could all be closer than we think 😉
Those tests won't obviously happen but it did get me thinking 😕 which always hurts😂
😆...it really would be interesting...it's going to happen...individualised medicine is the way things are heading...I hope we see it in our lifetime 🍀😘🍀😘
Grumpy-guts here. The stats are interesting, but given many of our experiences with specialists reluctant to use the "L" word, I'd say add a wee bit more ❓
Interesting! Thanks as always Coco.
We seem to have a relatively rare condition with a corresponding far to high mortality rate 😧
Great discussion 👏🏼
Spot on 🦉🦋🕊🍀😘
This is definitely a very interesting topic, especially when you look at demography. A useful study in the context of Lupus. If there is a University prepared to follow this up, Lupus UK may be able to support the research. Best wishes Kevin
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Hi Coco;
I went to the web site and one of the first things that jumped out to me was, the ratio between females and males with lupus. The rheumatologist I go to, I have yet to meet another guy with lupus there. The research center here is always getting me into a study, because I am the only male with lupus in the area, (that they know of). I do not know of anyother males around here with lupus. So around here it would be higher than 12 females to 1 male with lupus.
Great site to do some studying on! Thanks for the information.
👣👣👣👣👣👣Tiras👣👣👣👣👣
It's much the same with most autoimmune disorders:
"Autoimmune diseases affect ∼8% of the population, 78% of whom are women. The reason for the high prevalence in women is unclear. Women are known to respond to infection, vaccination, and trauma with increased antibody production and a more T helper (Th)2-predominant immune response, whereas a Th1 response and inflammation are usually more severe in men. This review discusses the distribution of autoimmune diseases based on sex and age, showing that autoimmune diseases progress from an acute pathology associated with an inflammatory immune response to a chronic pathology associated with fibrosis in both sexes. Autoimmune diseases that are more prevalent in males usually manifest clinically before age 50 and are characterized by acute inflammation, the appearance of autoantibodies, and a proinflammatory Th1 immune response. In contrast, female-predominant autoimmune diseases that manifest during the acute phase, such as Graves’ disease and systemic lupus erythematosus, are diseases with a known antibody-mediated pathology. Autoimmune diseases with an increased incidence in females that appear clinically past age 50 are associated with a chronic, fibrotic Th2-mediated pathology. Th17 responses increase neutrophil inflammation and chronic fibrosis. This distinction between acute and chronic pathology has primarily been overlooked, but greatly impacts our understanding of sex differences in autoimmune disease."
and another discussion is here
ncbi.nlm.nih.gov/pmc/articl...
where they say 9:1 women to men in SLE.
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I went to the web site and read it. I have said this before. 👣 For those of us who have lupus ( I have SLE) it is different for each of us but, yet the same. That doesn't make sence but, then neither does lupus.👣
In reading this I fall into ABSOLUTEY none of the categories?
I am a white male 57 years old, from the southeastern part of the U.S.A. In the state of Alabama.
I had issues for several years the doctors said they could not find anything. My dermatologist is the one who accidentally discovered I had lupus. I was diagnosed about 3 years ago.
I did not know what lupus was up until that point. Started researching it, and all the issues I had were lupus symptoms. The doctors were not looking for lupus, I didn't fall in any of the categories.
Thanks for the information.
👣👣👣👣Tiras👣👣👣
It is the same problem with ageism in illness. I have polymyalgia rheumatica, it is closely related to giant cell arteritis. The "experts" will tell you that the average age at diagnosis is 72 and it "never" happens in under 50s. Patients who the doctors decide might have GCA who are under 50 are often told they have Takayashu's arteritis - to all intents and purposes identical. At the age of 50 one woman had the dx on her notes changed! Like everything else there are far more women patients than men - but a couple of years ago a 37 year old male in South Wales was found at post mortem to have died of a stroke due to undiagnosed GCA - failed twice over.
There aren't more men or younger patients because they aren't looking for them - and send them home with other diagnoses, usually of things like fibromyalgia for which there is no test and no cure.
Horses, zebras and mules...
GRRRRR...😡....am furious at so much cowardly negligence...the GOOD medics know what they don't know, but try to help come what may...
Given that most autoimmune disease is not curable (yet) you would think, would you not, that they would be keen to at least try to manage the problems and reduce pain/organic damage/pure misery? They seem to regard that as failure. Maybe we need palliative care mindsets in autoimmune medicine?
Is too many a good enough statistic?
Lovely photo. Thanks.☺
Radiation also triggers auto immune conditions. Chernobyl 1986. It rained in many parts of the north west. Parts of Snowdonia are still so radioactive that the sheep who control the grass are not allowed into the food chain. Was there an increase in Lupus and other conditions in the cohort born in 1986?
Lupus
Lupus or not lupus?... That is the question...
Is this lupus?
