Lupus: An Invisible Monster - New LUPUS UK Video

Hi everybody,

Today as part of Lupus Awareness Month in the UK we have launched a new video to help raise awareness of the effects lupus can have on somebody living with the disease and its often 'invisible' nature.

Please take a look at the video below and share it with as many people as you can;

Thank you!

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  • Interesting, informative, covers a great range of symptoms and easily understood! Thanks Lupus UK πŸ˜€

  • I should show this to my 'Rheumatologist' ( and I use that term loosely) *sigh*. Blood tests are a waste of (her) time and if your joints are painful but not red or swollen, tough......

    (BTW the hospital mucked up my ENA- AGAIN; THIS time my sample was omitted from the worksheet, and by the time they located the sample, there wasn't enough blood left to determine anything other than a positive result .This is the SECOND time this has happened)

    I am beginning to give up, in all honesty. No one is interested and no one seems to be able to do anything right. This video should be shown to every nurse and doctor who professes the remotest interest in lupus; at least it might prevent them from just paying lip service to the condition and ignoring the anxieties of their patients......

  • I'm sorry to hear that you are having such a bad time with your rheumatologist. Have you considered asking your GP to refer you to a different one? If you let me know what area you live in I can tell you if there are any lupus specialists nearby?

  • Very good! It would be nice if all the people who don't understand Lupus could see this. I don't know how many times people say to me "you look really good" when I feel terrible inside. That's why this forum is so important because those of us who are unfortunate enough to have this disease are truly the only ones who can understand.

  • What a great video that so perfectly describes how I feel! I'm going to show it to my friends and family. Only last week 2 friends were asking me exacting what lupus is and how it effects me, I wish I'd had it then!

    Thank you lupus UK. πŸ€—

  • This is reasonable in its content, but it does feel to me as if it almost directed to children, rather than adults to whom one might wish to communicate the problems of lupus. Possibly also it would be a good idea to explain in more detail the problems with sun sensitivity and fluorescent lighting. And then there are the side effects of medication, from weight gain to steroid crazies , which are not easy for close family member or friends to understand

  • Thank you for your feedback Neriah. We've found that our animated video clips tend to receive a much better response and get shared more widely, which is why we chose this format again - it is much more effective for raising awareness.

    Unfortunately we couldn't possibly say everything that we would want to about lupus in a 3 minute video. The other things that you have mentioned are very important and will hopefully be covered in more detail with a future release.

  • I would show this to people but fear it plays down how bad I feel much of the time. It focuses on fatigue and doesn't mention the horrendous, nerve screaming aching that happens in a flare. I know it's hard to cover much in a short video, but the aching is one of my main symptoms that comes along with the fatigue and so a video which conveys that would be great!

    Thanks for all the work you do though, it is appreciated!

  • I should show this to my manager

  • Hi ajanjua,

    Have you given your manager a copy of our booklet, 'When an Employee has Lupus - An Employers Guide'? This and our other employment booklet are available to read and download at lupusuk.org.uk/working-with... or if you would like a physical copy, please just send me a private message or email paul@lupusuk.org.uk with your name and address.

  • Brilliant video πŸ‘ŒπŸΌ

  • Not good for all the people on here who are facing appeals after having benefits stopped, it implies that you can still go out to work despite the fatigue, some have found they can't work .

  • H Buffy14,

    Thank you for your feedback. As I'm sure you'll appreciate, this is just one person's experiences portrayed through this video and with lupus affecting everybody so differently it isn't possible to fit it all into 3 minutes. As you say, there are unfortunately many people who aren't able to continue working because of various lupus symptoms. Hopefully these experiences will be portrayed in another video in the future.

  • The perfect video to explain what people with lupus go thru. Thanks for this video. It gives us a voice when its hard to explain lupus.

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