Lady GaGa's "borderline positive" lupus | Lupus Forums at The Lupus Site
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Lady GaGa's "borderline positive" lupus

Discussion in 'Lupus News, Awareness and Research' started by Clare.T, Jun 7, 2010.

  1. Clare.T

    Clare.T Registered

    Awareness is sometimes promoted in the most unexpected ways! Just think how much she could do for our cause. Some show biz people would not make good ambassadors, but I haven't heard any personal scandal about her.


    Clare
     
  2. Katharine

    Katharine Registered

    Yes, I have been wondering about this since I heard about it and whether she will be one of these people who will want to raise awareness or one of those that wants to keep that side of life private to the extent that she never speaks about it.

    Katharine
     
  3. Jessica1

    Jessica1 Moderator

    It certainly raised awareness for my manager who made a special call to ask if I'd read about it in the Times that weekend! She said she'd read it and thought of me, so it's a start. Let's hope it's all good press.
     
  4. lin

    lin Registered

    didnt know, still wish i had the energy she as... hope they keep it under control for her, love the voice!!!
     
  5. itchywolf

    itchywolf Registered

    I'm interested to learn of her symptoms and management, if she tests positive for lupus.

    She could become a major role model on how much potential we all have to fight this. Thanks for sharing this news.
     
  6. Paulin46

    Paulin46 Registered

    I was told by a rhuematologist I was borderline for lupus at the beginning. I had the blood tests and they were positive for it. I guess i didn't complain enough about my other symptoms. I was so used to living like that I couldn't tell if it was normal or not. Thank God My immunologist gave me a firm diagnosis. Before that I did not take it seriously.
     
  7. Clare.T

    Clare.T Registered

    I read that she did "test positive" for lupus, whatever that means, but since she has no symptoms she has not been diagnosed. Seems an aunt of hers died from lupus. Relatives of people with lupus may test positive for antibodies but never develop lupus. Other people can have antibodies and never have any problems with them, as far as is known. Obviously, if you find out that you have significant antibodies, you need to keep an especially careful eye out.

    My interest was piqued by a report of her saying something like she was determined to do her best to avoid developing it. I wonder what she means by that. That's the sort of casual statement that has so many implications it's verging on the irresponsible- or the ignorant. The majority ( I'd say) of us have no inkling that we are even predisposed. I would so love to know what exactly she's thinking of.

    I see that this week's issue of Grazia has something about it

    http://www.graziadaily.co.uk/Latest...gaga--exclusive-kylie-interview-and-summe.htm

    I'll see if I can sneak a look at it in the newsagents. :)

    Clare
     
  8. Peacesoul

    Peacesoul All Natural

    I saw her on Larry King and see that where it says she "tested for lupus", like Clare, said, Whatever that means
    There is no one test so it's a little confusing.

    She's a really young woman so her comments about trying to avoid it are more on the side of lack of knowledge than irresponsible though.
     
  9. Anastasia

    Anastasia Registered

    At this point I'd just like to insert a rant about how healthy people on the Net and in the media are always boasting about how they're healthy because they "look after themselves" and "eat right, take exercise" etc. And I want to scream at them "You are not immune, you're not superior, you're just lucky!" Grrrr! Like many on this site, I ate right, I exercised, I did everything I could to be healthy. I used to be a real gym-bunny and martial arts nut. Now there are days I can't leave the house.

    A silly celebrity going on about how she was "tested" for lupus but is going to avoid the symptoms by healthy living, isn't helpful to the cause IMHO.
     
  10. Katharine

    Katharine Registered

    :rotfl: Anastasia - I bet that felt good to get that out!

    I agree that it is very irritating. It's bad enough getting that kind of talk from well meaning friends and relatives but having it in the press is worse. I too did everything right (except I maybe worked a bit hard but they'd say that's good for you right?).

    Katharine
     
  11. Clare.T

    Clare.T Registered

    Anastasia I couldn't agree more!:hehe:

    The R&B singer Kelle Bryan did something similar a few years back when she declared how she had successfully treated her lupus with some fantastic supplement she had had especially imported from the USA. Her lupus seems to have put paid to her career all the same. I see she's now a patron of St Thomas' Lupus Fund where she was diagnosed and is presumably a patient. Apparently she features in their 2010 calendar.

    Well, I guess after being involved for so long with lupus support that I am nit picky in the extreme, but if people are going to talk about lupus they should get it as right as possible: to say lupus is a "genetic disease" could be very misleading, although I know what she meant. I guess almost any mention is better than nothing except for the notorious Oprah show in which she had a mystic healer claiming lupus and other chronic incurable diseases were all the result of "unresolved conflict". Which, needless to say, Ms Mystic ( that really is her name) could cure with her courses and books.

    I take my hat off to Mercedes Yvette, runner up in America's Top Model 2, who's a spokesperson for the LFA. She had to explain at one point in the show why she was so unwell, worn out and losing her hair. Tyra gave her the opportunity to talk about lupus and explain what it was and a little about medications. I read that they sent her to Dr Wallace for evaluation and treatment. She says in one article about her career.

    So much is due to luck. It was my bad luck to get a very particular gene combination that they know is associated with SCLE and the photosensitivity issue. It's reasonable to assume that the UV light therapy, tanning bed really, I had as a teenager for teenage skin problems could have provoked the disease process. Just to comment I'm talking about 50 years ago when the health benefits of sunlight were universally recommended). It was good luck that I was very quickly diagnosed and generally speaking got some medication even if it was not effective enough for 26 years, and my great good fortune that my SCLE never progressed to systemic organ problems of any sort as it so often does.

    I just hope Lady GaGa and anybody in a similar situation knows how important it is to get regular checkups for hidden signs of disease worsening and of course not to delay if possible new symptoms appear.

    Cheers!
    Clare
     
  12. Peacesoul

    Peacesoul All Natural

    Not to cause a stir or ruffle any feathers. I went from being very sick and nearly bed ridden to back on my feet to living by changing my lifestyle alone.
    It's not been my "cure" but it's given me a much better quality of life.

    I've been drug free and only eating clean, taking supplements exercise and adopted a different perspective. I'm back to work full time at a stressful job and take my courses, I also live alone and have no help. It can be done. I never thought for one minute I could not do it.

    There are varying degrees of lupus (illness) and not every one can be functional just from eating well and changing their lifestyle, but I can say with the most certainly, that it can increase your quality of living.
     
  13. greenhaggis

    greenhaggis Registered

    Just a reminder to all that alternative therapies used alongside Lupus treatment or instead of should 'always' make sure before embarking on any changes you get the sanction of your health care professionals.

    Vitamins and supplement and other alternative medications can have many adverse side effects just like prescribed medications.

    Most important thing is balanced diet (which means balance on nutritional things) and a positive mind, like most we have no choice and use medications and that is also 100% important too!

    Sometimes we can feel really super, but behind the scenes and inside our bodies the Lupus can still be at work and doing damage that we may not find out about for ages!

    Whatever anybody chooses as a treatment path is very individual, we just need to keep in mind that there is no current cure for Lupus and treatment can be crucial to quality of life and a longer life and that we never know when, where or even why flares can suddenly come out of the blue.
     
  14. Anastasia

    Anastasia Registered

    Good for you.

    Of course, there are people who have such remissions despite living on chips and beer. I had a relative like that - smoked like a chimney, lived on fried food, never went to bed without a whiskey or two, rarely took any exercise, chronically overweight. Died when he was 92. Often it is just luck.

    And I'm genuinely glad you "never thought for one minute I could not do it". Positive thinking can be helpful. Unfortunately, there are many people who also didn't think for one minute they couldn't - until they actually couldn't. It never even occurred to me that I couldn't overcome my illness with willpower and healthy living. Now I'm working on acceptance. Sometimes you cannot change what happens to you. I'm fortunate I have some good modelling from my mother, who, despite her very positive attitude and healthy eating, lost her sight when I was a teenager, from an autoimmune condition similar to lupus.

    Contrary to what you may believe, the actual evidence is (from research) that people's attitudes to their illness makes little difference to the illness' progress (many of the studies are into cancers and conditions like RA).

    Nevertheless, I wouldn't wish you to find this truth out for yourself, by getting seriously ill despite your efforts. If you're healthy, then that is all that matters, and it is good that you feel positive. Just be very, very careful of implying that other people are sick because, unlike you, they did something wrong. Every time I encounter someone who asks about my illness, and then brags that that couldn't happen to them because of their 'healthy lifestyle' (even though usually its just luck), I have to smile through gritted teeth.
     
  15. Peacesoul

    Peacesoul All Natural

    No where did I imply people are sick because they did something wrong?

    It's nice to know you knwo what "I believe" from one tiny post.

    Too much agression on this site. Not sure I want to be part of this

    All the best everyone
     
  16. greenhaggis

    greenhaggis Registered

    Peacesoul,

    ******please can this thread get back to topic!!!*******

    You have had no aggression, just opinion which is different to yours!

    All opinions are welcome as long as respectful and not overbearing or made in a professional way.

    We do welcome you here, but as stated before everyone will have a different view...plus on top of that more people on this site may be suffering more so with disease than you.

    Anasrasia and myself have not breached the guidlelines and have shown you no aggession...very strange that you think we have...but then as with lifestyle adaptations that is also your own opinion.

    I hope that you can overcome any difficulties and join in with this site like all other members.

    We are all here to help and not hinder.
     
  17. ElephantEyes

    ElephantEyes Registered

    Hi all -

    I was intrigued by the whole Lady Gaga story so I went off to peruse the story in Grazia. I was quite annoyed by the cover with the caption "Shock pictures 'confirm disease'". As we all know, pictures do not confirm a lupus diagnosis - if only it was that easy!

    The article wasn't too bad though - the magazine had contacted St. Thomas's Lupus Trust for further information and despite the cover of the magazine confirming lupus, Angie Davidson pointed out that it might just be acne, but with a borderline positive diagnosis, rashes ares a cause for concern.

    It also pointed out that lupus is difficult to diagnosis, because the disease flares up and ebbs away, before moving onto some sweeping statements about lupus that fail to reflect the complexity and variety of lupus activity. It says that 'Genetics and hormones are thought to play a role, but so can external factors'.

    As regards Lady Gaga's role in promoting awareness, she said on Larry King 'so, as of right now, I do not have it, but I have to take good care of myself'. I don't really read that as her thinking that if she just becomes more clean living, she won't get lupus. Other people, who are not aware about lupus (not anyone on this forum may I hasten to add :)), may think that may be the case, but Lady Gaga strikes me as an intelligent woman and since her aunt died from something related to lupus, I would wager she has a fair idea about the nature of it.

    I read her comment as meaning that she will pay close attention to her body for signs that it may be developing into lupus, but I guess the problem for people with lupus is that if she doesn't make that explicitly clear, there is always a danger of the general public reading it as people can prevent lupus by lifestyle alone.

    I remember reading Kelle Bryan's advice about supplements and a mentallly strong attitude with horror, but I have high hopes for Lady Gaga, should she decide to promote lupus awareness. Maybe that's just wishful thinking though!

    Take care,

    Nellie
     
  18. Paulin46

    Paulin46 Registered

    Right on Anastasia!


     
  19. pennylp

    pennylp Registered

    Hi there,

    Boy do I agree with you... I too feel the same way.... ALthough I think I have had lupus since I was a young girl... My GP.. also thinks the same thing... I still Ate well and excercised a lot... Did all the things I was supposed to do... If I read something that said, Eat this or that, I would include it in our diet... And even though I did all that, I was still diagnosed with cancer on top of all the other things...My son in law's mother was having dinner with us at our house a year or so ago... I would assume she knew I had cancer and this is a coment she said , People that have cancer is because they do not eat well and look after their bodies right." She further said that is why she was so healthy... I felt like jumping out of my chair and smacking her up side the head :lol:
     
  20. sam101360

    sam101360 Registered

    Lady gaga, wheter she has a positive DX or not, no matter what she may have said, has become a spokesperson of sorts for Lupus...

    http://www.lupus.org/webmodules/webarticlesnet/templates/new_empty.aspx?articleid=3276&zoneid=76

    She made a donation to the LFA and will, I am sure get information straight in her head and perhaps get better at being more definitive in her discussions of the disease. I believe that at this time she may be going through what we all do in the early stages of diagnosis, denying the severity of the disease, and perhaps just a bit frightenet about the prospects for her future. Maybe even not admitting to herself what this could mean to her life and career.

    I believe that she may also NOT be getting proper guidance from her agents and press people on how to handle this with the public...they think about perceptions and profits than her life.

    Give her a bit of time to come to terms with the possible diagnosis, and the effect on her life, see how she discussed the topic with the press in the future...then we can judge her more fairly.

    Love you all - Stephanie
     

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