More Lupus Awareness

[misty14]

Hello everyone

Have just read that Lady Gaga has named her latest new album Joanne after her aunt who died from Lupus at 19 years old!. It's released on Friday. Her father is very upset at his loss so she wants it to help heal them all as a family!.

Happy Lupus Awareness Month and I hope your all as well as can be.

MistyX

[Barnclown]

👍👍👍👍🌟🌟🌟🌟👏👏👏👏

[Penelope-Mary]

Thanks for that snippet Misty, sad and beneficial 🕊

[Buffy14]

Lady gaga has the disease herself so that must be very worrying for her it's terrible when anyone dies from this horrible disease but even more so when it's someone so young . A few years ago when I was in my local asda store they had collection boxes for lupus on the checkouts , I said to the cashier" you don't often see collections for lupus it's quite a rare illness " she explained that one of their staff had just died from lupus and she was only 24 years old . Have any of you noticed that you tend to get one of two reactions when you tell people you have lupus 1) a completely blank expression and 2) oh no have you , someone said that to me a few weeks ago and i could tell from the way she said it that she probably knew of someone who had died from it . They do say now that life expectancy has improved so there is hope out there I know someone who started with lupus at 42 years , she wasn't diagnosed for years , she is now 82 years old .

[misty14 in reply to Buffy14]

Hi buffy

Thank you for replying. It is always shocking when young people die from lupus, really brings it home what a serious illness it can be and the drugs are too!. I thought I'd read a while ago that lady Gaga has lupus but I wasn't sure , what a role model she is for the disease and as you say must be worried at her strong family history!. What I didn't include in my post from the article was her aunt was recommended to have her hands amputated and her mother refused and she died, but what quality of life would she have had?. Terrible dilemma for the family!.

It's interesting the reaction you've had from people when you've said you have lupus and lovely you know someone diagnosed at 42 and is still here st 82. It just goes to show what an unpredictable illness it is!. I've found more and more people say they know friends and have family members with lupus now!. Awareness has so improved in the last ten years thanks to us members and lupus uk. It's the medical profession who still need a lot of educating. What do you think?. Hope your in a better phase. X

[Buffy14 in reply to misty14]

Yes the medical profession really needs educating , I like many others on here are going through a nightmare at the moment having to appeal because after a medical assessment by Maximus I was given zero points and my esa has been stopped. It is so wrong people have to be assessed by doctors who know nothing about the disease, the doctor who assessed me hadn't a clue what my medication was , Mycophenolate, she didn't put that I am immunosuppressed in the report and told many lies. Gp,s in general don't have a clue , I very rarely see a gp because I am checked every 4 months at the hospital but if you do see one they seem oblivious to the fact you have a chronic disease.l have found most nurses in hospital don't know what lupus is although I do remember when I was in hospital following surgery to remove a brain tumour one particular nurse was being very caring , holding my hand when I had to have a lumbar puncture etc , when talking to her one day she told me her sister had died from lupus at 32 years old .

[misty14 in reply to Buffy14]

Hi Buffy

So sorry you are having to appeal your ESA result. I can't believe how wrong they are getting them and causing untold stress!. I hope you've had the help of Citizens Advice, dial or a welfare rights worker for your appeal and you get the right result. It's questionable any money is being saved as so many people get it reinstated at Tribunals which must cost a lot to hold!. Let me know how you get on. X

[Buffy14 in reply to misty14]

Yes thank-you will do , I would love to know how much it is costing to change DLA to PIP aswell , they waste money and then complain about budgets all that money could go into the NHS or something else more useful x

[Hidden]

Hello,

Thank you for bringing this to our attention.

Lupus Awareness month is indeed a great opportunity for us all to raise awareness of the condition further and share information.

It’s good to see such a well-known entertainer put the spotlight on lupus and the effect it has had on her family.

[misty14 in reply to Hidden]

Hi Fabienne

Welcome to lupus uk, hope you are enjoying your new job. Thank you for your lovely reply. Awareness of lupus has changed so much for the better over the last ten years thanks to the tremendous work of lupus uk and its members. Sadly though there's always more to do specially for the medical profession!. X

[SLEEPINGDOG]

I never knew that people could DIE from it (GULP! 😕)

[misty14 in reply to SLEEPINGDOG]

Hi sleepingdog

It's very rare to die from it and you are more likely to die from side effects and infections caused by having to take serious drugs for a long time. Hope your as well as can be.X

[ava97 in reply to misty14]

does anyone die frome lupus??I don't think so.but is it true??that for taking steroids so long one can die??I am now just 19 and I m taking steroids.ALASS!!!What will happen next I don't know I can't be able to think of this.

[misty14 in reply to ava97]

Hi Ava

Your at extra risk of dying from the complications of the stronger immuno- suppressives that are used to treat lupus and or infections than the lupus itself. With careful, regular monitoring things are picked up quicker and treated sooner so minimise problems. X

[Paul_Howard Partner LUPUS UK in reply to ava97]

Hi ava97 ,

Yes, unfortunately in some very rare cases lupus can have fatal consequences. The risk of this is continuing to decrease as our understanding of lupus improves so that we can take preventative action against certain risks. The biggest risks are heart disease, infection (usually because of immunosuppressive treatments) and the lupus itself (often because of non-adherence to treatment).

Steroids are a very important and effective lupus treatment. They do potentially have long-term side effects, but your doctor will weigh up these risks against those of not having the treatment. Over time, your doctor should be able to help you wean off the steroids when your lupus is being well managed.

[ava97]

yes my doctor said that he will continue 7.5 mg steroids daily bt the peoblem is I am feeling tired sometime or there is no mobility in me.so I am worrued that if my flares up??or he is going to increase my steroids??already I am on 10 mg perday

[Paul_Howard Partner LUPUS UK in reply to ava97]

We couldn't really say what your doctor may choose to do with regards to your treatment. They will, however, carefully weigh up the potential risks and benefits of any course of action. You are not on a particularly high dose of steroids at the moment, so I'm sure your doctor is taking every precaution.

[misty14 in reply to ava97]

A short course of extra steroids to help your flare Ava is not harmful. It's if you stay on a high dose for a long time!. Your consultant will be very mindful of this as your young. Are you due to see him?.x

[ava97]

no I am going to visit him next Saturday.I haven't delay any appointment now I am on antibiotic cuse I have a urine infection.

[misty14 in reply to ava97]

Hi Ava

Good luck for your appointment next sat. Hope it's helpful. Are you in Britain or abroad?. Urine infections can make you feel lousy so I hope you feel better soon. Let us know how you get on. X

[ava97]

ok misty I will tell u after my next urine test...and I don't live in uk..I live abroad.I am from bangladesh.A south asean country.