How many blokes are registered on here?

Since being diagnosed, I keep being told I'm quite a rare specimen each time I see a new doctor or consultant at clinic or A&E. Or should that be "speci-man" !! And when I was hospitalised, there was particular interest from the student doctors and mature doctors on the ward round, followed up by more private chats about my condition and experience.

Being new to this community, I wondered how many other blokes are in this particular little community?

18 Replies

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  • I am! Was diagnosed about 9 years ago, but been ill for a lot longer. We are definitely out numbered, but hey, its better than being alone with lupus.

  • Don't beleive the hype, there's a lot more men out there with Lupus than it would seem.

    I've also got Autoimmune hepititis AIH, (why we need differrent names for each autoimmune disease, I don't know) so I get to float between the AIH comunity as well. There seems to be a larger number of men in that community. So my thought is; how many men within that community or others like it are getting Lupus symtems overlooked. It took 4 years and a lot of head scratching to diagnose lupus as well.

  • Is it my imagination Jarrod - or do you look a little like Hugh Laurie?

    In which case, you should know it's NEVER lupus!

    :)

  • Except when it is.

  • Hi D12, welcome to the "10% Club"!!! The name is obvious for the statistical information of 90% female to 10% men.

    I'm the Suffolk Lupus Group Lead and we have around 5 members whom are male, me included!, so you are not alone.

    Hang in there!!!

  • There's a Suffolk group!? Im in Colchester and thought my nearest group would be Romford.

    Where abouts in Suffolk do you meet?

  • Hi Jarrod,

    You can find out more information about the Suffolk group including where and when they meet here - suffolklupusgroup.org/

  • Hi there, another bloke here. My rheumy can't make up her mind whether I have psoriatic arthritis or Lupus but generally we go with the lupus diagnosis. Welcome to the club. Anyone in the Gloucester area?

  • me to, still awaiting formal diagnosis, 10 % rubbish, plenty more of us but because of the stats lots of docs wont diagnose or overlook it.

  • I only thought there was like 5 men on this site. Slightly more than that i can now see, however we are still vastly outnumbered by women. Don't know about you but i think being outnumbered by women is a good thing lol.

  • As awareness of Lupus increases so more people who have been diagnosed with everything else under the sun will now get a fair crack and our numbers will swell. took me 15 years and it was only when i met Dr Hunt at Guys that I got my diagnosis. Like many people I had been around the houses and even members of my own family had called me a malingerer.

  • It's good to hear from other men out there. I had been told about the 9:1 women to men ratio. My older sister suffered from lupus too. Past tense, because she sadly passed away a few years ago just 37 years young after battling it for half of her life. Her courage and beliigerence keeps me going. As do the stories and experiences of the fabulous people on here.

  • Came across this today - might be of interest to all you 'elite' lupie guys!

    lupus.org/webmodules/webart...

  • Hi folks, just signed up as i am currently going through the diagnosis just now. I have just found out that i am photosensitive and that seems to have just switched on in a big way, my left side of my face has the rash, sides, forearms and left calf. Going to skin specialist tomorrow, only took 3 weeks for an appointment since speaking to consultant, my GP has been ace, been seeing him for 4 months and it was he that ushered in all tests. I had never heard of lupus before, currently off work until the end of June until we can diagnose me properly.

  • Malar rash which worsen with heat/light, discoid rash on legs, chronic inflammation, etc, etc,...all very lupus-like but who knows...I agree with Jarrod with respect to the names thing. Must ask my rheumy about the test for ANA but on the other hand I know my symptoms and they are being managed ... so what's in a name. Its all a dysfunctional immune response!

  • I think having a label is useful to assess future likely complications. For example lupus rarely causes joint deformity but RA does. On the other hand, lupus can attack organs that Sjogren syndrome doesn't. It helps us to prepare ourselves on what might be coming our way. I agree that from the perspective of tretment the label is less relevant, however.

  • I hate labels but, with illnesses its very important. firstly it can give you piece of mind that your symptoms/ condition is real and is recognised as such by the medical profession and others, secondly hopefully you get the correct treatment for said condition. thirdly hopefully medical profession will have appropriately educated doctors in said illness, sadly at the present time this is definitely not the case for lupus. lastly a label is important for the dss and your employer because otherwise if there was no label you could just say im ill and the range would be vast and ridiculous. In regards to stewart 1969 post I agree, Personally all auto immune problems should be recognised equally M.E/CFS, different types of lupus etc its all screwed up immune system response.

  • i am male in my forties.suffered for almost 25 years. i will try to get involved more on this site if i can.....you know what it's like struggling with concentration etcetra....

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