Lady Gaga Needs Better Lupus Information!

 

Lady Gaga graces the cover of the newest issue of Rolling Stone magazine, and inside she gives a candid interview full of her thoughts on topics like gays in the military, her much-anticipated new album and how she plans to battle lupus, a disease in which she tested “borderline positive.”

Inside this week’s Rolling Stone, Gaga gives an interview inside in which she talks about how she deals with lupus, and how she refuses to let it define her life.

“It’s more making sure that I reduce stress in my life to make sure I don’t develop [the disease],” she said. “I make much more of an effort now to minimize the drama or the stress. … I take care of myself. I drink and still live my life, but I could never let my fans down. That would kill me to have to face that extra obstacle every day to get onstage. It’s completely terrifying, so I’m just really focused on mind, body and soul.”

I personally am dissapointed at the impression she might be giving that with low stress and taking care of yourself you can somehow “ward of lupus”. I am also so sad that the people who are taking care of her… managers, doctors, whoever, isn’t giving her the right information about Lupus.

Of course as always, I wouldn’t wish this disease on anyone, but if they do get lupus I would want them to have the right information so they can fight the disease properly. I would love to talk to her, if even just to get her in touch with some great doctors, give her some creditable lupus information, or just be there for support. You CAN have a good life with lupus, but first you need to know what it is.

Just my two cents.

Love and Spoons,

Christine

Catch more of Gaga’s interview in the current issue of Rolling Stone magazine.

Read Christine’s first essay about Lady Gaga’s Lupus “coming out”. Dear Lady Gaga: a Love Letter from a Lupus Patient

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  • Odette Klue-Michael

    Lady Gaga has fibromyalgia not lupus. So if you’re going to give your two cents on something you should at least get the subject right.

  • Beth

    is being “boarderline positive” anything like being kinda pregnant? You would think that someone of her stature, she would have the best care and correct information on this disease. Minimazing stress is not a cure-all! You either have it or you dont, there are no inbetweens!

  • Jaclyn

    Agreed – I hope the LFA or an expert like Daniel Wallace reaches out to her before she spreads more misinformation.

  • Annette

    As another lupie who’s lived with it a long time (dx 9/84), multiple system involvement and many serious flares, I wouldn’t wish it on my worst enemy, so I’m glad she’s not showing any signs or symptoms. Better information is certainly needed, and I hope she takes you up on getting it. And others may follow, which is always good.

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  • Melody Ream

    I so agree with you, Christine! She also needs to be educated and informing the public that everyone that has a diagnosis of SLE has different organ involvment, symptoms and treatments. Many of us have several of the same symptoms and problems but some of us have other complications of lupus. My rheumatologist strongly believes that lupus caused me to have pancreatitis and now I don’t produce enough insulin so I’m a diabetic. This is uncommon but it does occasionally happen with SLE. I hope she will follow-up with the correct information as it could bring much needed awareness.

  • I honestly think it could be a matter of semantics in this case. She could be showing some indicators of having lupus such as an elevated ANA, but not very symptomatic. Whatever “borderline lupus” means to her, we don’t really know. She may be following doctors orders so that if she has any symptoms they will be less affected by stress if she makes an effort to reduce the stress in her life. Does that make any sense? lol, it’s late. haha. Anyway, I do understand where you all are coming. It’s very hard to watch someone who is a role model not give all the facts which may come off as uneducated, or that “if I take care of myself, I won’t get as sick.” We have to try to remember that this is one case out of many. Being a role model to so many young people, yes, I do believe she needs to provide a bit more information, even if it’s not her personal experience. MAybe some sort of disclaimer?

  • Patrice Howe

    I think she may be doing us more harm than good! We all know what her blood tests are saying! For all you “borderline” people out there Listen to your Docs–they are the ons who will let you know how to cope!!!!

  • Cathy

    So in other words she is saying if you cut out stress and drama you will be fine? I wish it was that easy, someone needs to educate her and everyone eles about Lupus, it is a horrible disease I wouldn’t wish this on anyone. We need to spread the word on this one. and How do you get border line lupus?

  • I want to know what test she had that showed “borderline lupus”. She stated on Larry King that she was tested soley because a relative had lupus. (as was my sister).
    If the ANA was the only test done, and showed elevated levels it could be an indicator of lupus *or* it could be any one of a number of other autoimmune diseases like Rheumatoid Arthritis … it also can show very HIGH levels with no symptoms and no other antibodies …simply because lupus runs in the family. My sisters ANA levels are much higher than mine.

    A lupus specialist told her doctor that lupus is so genetic, that relatives, particularly first degree relatives will run high ANA’s and never develop lupus specific antibodies or symptoms … it does not mean they have lupus or borderline lupus .. it means they are at higher risk than the normal population ..but is not a definitive diagnosis.

    I think Lady Gaga is doing more harm than good to bring about appropriate information … since her ‘relevation’ I’ve already had SEVEN people tell me if I’d just taken care of myself I’d never had gotten sick.

  • Carol Adams

    I agree, Christine. It is amazing the ignorance surrounding diseases. I was diagnosed with Lupus in 03 and worked in a coronary intensive care unit amongst many intelligent RNs etc…however, even with my explanations and info most really didn’t “get it” and I think they thought it was “in my head”.
    As Sabine mentions above, even if other’s in your family have the diagnosis, it doesn’t guarantee that it is well understood!
    Christine, it may be helpful for you to actually write her a letter with your concerns. She does seem to be an intelligent person despite her persona.
    All we can do it keep attempting to educate people.
    Thanks! and hugs to you!

  • I think she should know so much better. But I know from my own experience that even if a relative like an aunt has lupus not everyone knows.
    I am going to link this to all the german spoonies or lupies as we say;)

  • Patricia

    I agree Christine..especially as she has young people looking up to her as a role model and hanging on and believing her every word.

  • On her Larry King interview, doesn’t she talk about her mother and grandmother having it?
    You would think she would know something about it then….