South Wales Echo

My whole life changed when I was diagnosed with lupus

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SELENA GOMEZ has revealed how she underwent a kidney transplant over the summer.

The 25-year-old pop star and actress has been suffering from lupus – a chronic auto-immune disease – since 2015.

In an open Instagram update, Selena shared a picture of herself on a hospital bed following the operation.

“Lupus continues to be very misunderst­ood but progress is being made,” she wrote.

I mean, you’ve got to give it to her – a kidney transplant at the age of 25 is huge. But a kidney transplant after suffering from a condition like lupus, and all under the watchful eye of the public and the media. Well, she’s a braver woman than me.

I think it’s great to see high-profile celebritie­s like Selena Gomez – someone who has become a role model to thousands of young girls (and boys) around the world – use her huge social media influence to talk openly about her battle with a condition like lupus.

And to use it to encourage her 126 million followers to donate to the Lupus Research Alliance. Well, that’s just even better. I guess this all means a bit more to me than anyone else, because I’ve recently been diagnosed with the condition myself.

It was July when my whole life changed. It was the month I was diagnosed with lupus nephritis.

The condition basically relates to inflammati­on of the kidneys – or in my case, kidney failure – caused by systemic lupus erythemato­us. Well, at least, I think that’s what it means anyway.

You see, lupus is still a relatively obscure condition. And by that I mean there isn’t much out there about it.

No-one really knows exactly what causes it, why people get it or, unfortunat­ely, how to cure it.

And there’s no handy guidebook handed out with a diagnosis, either.

But, in layman’s terms, here’s what I know about the condition so far: It’s an auto-immune disease It causes the immune system to produce too many antibodies which can sometimes attack healthy tissue and result in inflammati­on, pain and damage

Young women and people of African-Caribbean, Chinese and Asian descent are more likely to develop the condition – but anyone can get it

It’s something I’ll have for life – and it absolutely, undoubtedl­y sucks

I’m not going to lie, it was all a bit of a blow to deal with at the start.

Going from a fit and active person who trained in the gym five to six days a week, lifted heavy weights, climbed mountains and spent every waking minute exploring and adventurin­g – to a person who couldn’t even get out of bed in the middle of the night was a big shock to the system.

It was hard, but in a way – I couldn’t have been happier to find out I had lupus. OK, maybe happy isn’t the right word – but definitely relieved to have a diagnosis.

After months of chronic pain, countless trips to the doctor, days spent lying on the settee and repeatedly telling people I just “didn’t feel right” – I finally had answers.

I wasn’t just “tired” or moaning about some aches and pains any more. I knew what was going on inside my body and as bad as the diagnosis was, I was one step closer to getting back to the girl I used to be.

And it came just in the nick of time because to be completely honest, I was starting to think I was losing it a bit.

Surely I can’t be this tired all the time. Am I just being lazy? Maybe I’m stressed? Anxious? Is it all in my head? Should I maybe talk to someone?

All of these things were running through my mind and probably the minds of everyone else I found myself moaning to all the time.

Oh and there was some moaning, let me tell you. Work colleagues, friends, family – they all had it. No-one was safe. God – I was sick of the sound of my own whining by the end.

But it turns out, it wasn’t all in my head after all. It was in fact in my kidneys and my joints and my eyes and my skin. My bloody immune system was going off on one.

I was in fact waking up in excruciati­ng pain and floods of tears in the middle of the night, not because I was stressed, but because the muscles and joints in my knees, elbows and back were so inflamed I couldn’t move.

My feet and hands were so swollen I couldn’t walk to the toilet or open the handle on my bedroom door, not because I was anxious, but because I had lupus. Finally being able to put a name to it – well, that was the best medicine of all.

Ironically, for a while after my diagnosis, I couldn’t bring myself to read about the condition.

The internet – Google especially – brought up a shed load of horror stories. Worst-case scenarios like organ failure, infertilit­y, cancer, death – they were all passed off as being “normal” parts of the condition.

News websites and magazines kept using words like “deadly” and “life threatenin­g” to describe it.

That’s scary enough to deal with anyway – let alone when you’re battling a chronic condition (and I say that as an avid former self-diagnosing Googler).

I remember, when I was unwell or in pain as a child, my mam would always comfort me and say things like: “It won’t last for ever.” And it didn’t.

Whether it was the flu, a cut on my knee or the chicken pox, she was always right. A dose of Calpol; a bandage and some Germoline; and I’d be as right as rain soon enough.

But now I’m facing something that does last for ever; that doesn’t go away after some Calpol, and takes more than a bit of cream to make it better.

But reading about people like Selena Gomez and Lady Gaga – who has opened up about her battle with fibromyalg­ia, another chronic pain illness – who are so open about their conditions – well that gives me hope.

This is something I’ve tried to do from the very start. After being diagnosed, I told myself I wasn’t going to shy away from the condition. I am a writer by trade, so I would do what comes naturally to me – and write.

And hopefully by doing this, although not on any scale comparable to people like Selena Gomez or Lady Gaga, I can help to raise awareness of the condition, or even help someone else who may be going through something similar.

When I was feeling at my lowest ebb in July, when I was hooked up to machines and being pumped full drugs and medicines, someone close to me said: “Whenever you get dealt a s*** hand in life you’ve got to remember one thing: cheerfulne­ss in the face of adversity.” And they were right. So rather than focusing on the bad right now, I’m focusing on the good.

Yes I have lupus, but I’m alive. I’m not in as much pain any more and I’m getting the treatment I need. I’m surrounded by amazing family, friends, an amazing boyfriend and incredible consultant­s too.

If there’s one thing I’ve come to realise recently it’s that there’s always someone worse off than you in this life.

You can see that just by walking around our local hospitals. There are people who have lost limbs, lost loved ones, lost any quality of life they once had. But they smile and they say hello and they get on with it. And that’s exactly what I plan to do. At the moment I’m taking it all one day at a time.

I’m also stocking up on the fake tan, The lupus can stop me from going out in the sun, but that hasn’t stopped me from asking all the patients on my ward to chuck on a surgical glove and tan my back.

I’ve come to realise that laughter and being happy is the best medicine whether that’s through friends, family or a bottle of fake tan.

I’ve already overcome the worst, and I can guarantee that, real soon – just like I’m sure Selena will be – I’ll be back to my normal self, climbing mountains, exploring and adventurin­g. All while rocking an amazing fake tan!

If you would like to donate to Lupus Research Alliance visit www. lupusresea­rch.org

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