im a little bit miffed
its hard to get people to take you serious about it anyway cause you dont look ill, but i reckon this isnt going help tho.......thanx rant over xxx
I saw that and said exactly the same thing to my partner.
Weight has nothing to do with having lupus(apart from putting it on be cause of steroids).
Until I started taking steroids I had always been really tiny,then after a few years I went back to a size 6.Have gone up to a size 12-14 again but it is coming off slowly.
The way that woman said it,she was stating that she has lupus because she is over weight.Im afraid that is one of the biggest load of rubbish comments I have heard in the 17 years since I have been diagnosed.
I have just been diagnosed and I am far from overweight! I've not when on any medication yet so hoping that doesn't make me put the weight on but if it does it is clearly nothing to do with lupus itself! I am surprised someone like her who was diagnosed with lupus would say that on national tv ESP as she must know how hard it is to be taken seriously as it is!!!!! X
Perhaps some one should write to Day break and put the record straight,I would but i am not confident in stringing the words to getter,and i did not see the program,
But it was a rubbish comment!! weight has nothing to do with causing Lupus, problem the Meds do and our mobility.
I too think that Daybreak need to be emailed and perhaps they need to be made aware of what was said as there sounds like there are going to be lots of upset people about and many more who are misled and ill informed. I did not see the program so don't know what was said so am not in a position to do so but good luck to whoever decides to say something to them, I have contacted them about things in the past and they have always been great.
I have MCTD... and weigh 8 stone 2 lb... And trying to put weight on!!!!!
What a stupid comment to make.
I didn't see the program - but I know from friends how hard they find it to understand - they just don't get the concept of the illness at all.
Until I was diagnosed I was losing weight, not dieting, wieght just fell off. I wasnt put on steroids (a brief spell on them a couple of years ago & all agreed NEVER AGAIN) I gained 5stone in a month after my 1st stroke & every time I have mini ones or kidney infections, flares I GAIN EVEN MORE & it wont budge. I had hoped that seeing as my consultant has left me unmedicated (2 weak pos ana tests apparently means I dont have lupus.... but have APS - previous rheumy discharged me once, saying the same - then I had a flare & he had to appologise!) that I would lose weight again, but no... its not to be, apart from cutting meat & dairy from my diet stopped the diarrhoea & bloating stomach!
I was a stead size 12 for 35 years and did not put weight on 'till I went on 40mg Prednisilone a day. It is people like that 'Lady' that has just undone all the work I have been putting in with family and friends for the last 30 years. It just makes me so mad.
I have had lupus all my life and have always been a10/12 lupus can actually make you lose weight It is the medication that either increases our appetites ,or slows us down. So we not only battle daily with our disease but with our weight as well . I know that extra weight affects my joints and stiffness , so am really vigilant about my diet Don't get me wrong I have Munchie days but realise that I then have to watch the next day . I was on 50mg pred and been up and down so often , but fingers crossed I'm down to 22.5 this week and I have not put on any weight . I can't do anything about the swollen face and I do notice that I fluctuate weight wise from week to week ,but Lupus is most certainly not caused by being overweight .We are all different and certainly certain foods do exacerbate our condition.by eliminating those foods we can alleviate some of our daily pain ,but by no means heal ourself.I agree lupus uk should get in touch with daybreak and set the record straight. I am over sixty so do put my extra 5/6 lbs down to that My husband still loves me so that's the main thing Take care all and be strong as this is a daily battle Like a merry go round that you can't get off.
i have sent an email to daybreak lets see if anything comes of it
Thank you for doing this. I didn't see the programme but from what I've read here it didn't do us any favours!!
thanx for all your replies folks, i was starting to feel as if was going a bit paranoid. now i really hope that they do a good job on " frankie" tomorrow it looks like a few of my work mates might watch, and trust me some trained nurses who dont know much about lupus can be very hard to convince ( thankfully they are the minority ) xx
Thank you for making everyone aware of it.