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What is lupus? Three women describe living with a disease that can attack the entire body

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What is lupus? This disease has symptoms that can wildly differ among sufferers. Three women, with three different sets of symptoms, tell Vanessa Chalmers about living with this devastating condition

An international survey revealed a significant lack of awareness surrounding the disease known as lupus. To raise awareness, May 10th is World Lupus Day – a global call-to-action on behalf of the millions of people affected by lupus. To help improve the understanding of lupus, take action and sign the lupus awareness pledge.

Imagine a disease that is so unpredictable that it can affect the entire body without ever being diagnosed, confusing doctors and sufferers alike. That’s lupus and currently, some 15,000 British people suffer with it.  But while, staggeringly 90 per cent of sufferers are women, few of us know what it is, or have even heard of it. Indeed, Selena Gomez, 24-year-old pop star, ended her world tour early in August to recover from lupus-related panic attacks and depression. In the hours after, Google trends saw more than a 1000 per cent spike in searches for ‘what is lupus?’. A global survey by pharmaceutical company GSK this year also found that 51 per cent of people across 16 countries did not know lupus is a disease, and over half did not know that lupus can result in serious health complications.

Staggeringly 90 per cent of sufferers are women but few of us know what it is, or have even heard of it

So, what is lupus? It is an illness in which the immune system produces too many antibodies which causes reactions leading to inflammation of parts of the body, skin, or organs. Despite lupus being triggered by genetic or possibly environmental factors, the GSK survey also found that 57 per cent of people feel less than ‘comfortable’ shaking hands with someone with lupus, indicating they believe it is infectious. The disease, says the charity Lupus UK is complex and deceiving and otherwise known as the ‘invisible disease’, because it works in flares and periods of remission.

In the UK, the number of people with lupus is estimated by researchers as 15,000, but there is no actual number because so many cases go undiagnosed and in fact, the numbers could be much higher . ‘One research study in Birmingham suggested that one in 500 adult women has lupus in the UK whereas 15,000 cases only accounts for one in 3500,’ says Paul Howard from Lupus UK.

The symptoms differ from person to person, from mild to life-threatening, but the main symptoms are painful and swollen joints, fever, hair loss, severe fatigue, and a skin rash. But in short, it affects the body on a large scale.

There is no cure for lupus, but it doesn’t affect life expectancy. Medication can be used to control the symptoms, typically steroids, immune suppressants, antimalarials, or even in some cases such as Selena Gomez, chemotherapy. But these offset an array of complications themselves, such as weigh-gain with steroids, bone thinning, or stomach weakening.

For Lupus Awareness Month, we spoke to three women who live with lupus, with incredibly interesting stories…

what is lupus, living with lupus, by‘I was 24 hours away from death’

Sue Hayes, 67 lives in Surrey with her husband Mick. They have two grown children, Matt and Nicola

‘At the age of 38, I had to say goodbye to my children, after the doctor held my hand as he told my husband Mick and I that I had 24 hours to live. Lupus had overtaken every organ in my body, my skin, and my blood. Doctors had misdiagnosed my illness for years, and one even wrote ‘hypochondriac’ on my medical notes. The day before my diagnosis, resting in hospital after a collapse, a specialist nurse told me that I was wasting hospital time and I should give the bed to someone who needed it. I actually doubted myself, was I making everything up? But that’s the thing with lupus, it masks itself. It’s called the great deceiver because it doesn’t always show.

Lupus is called the great deceiver because it doesn’t always show.

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Sue at the beginning of motherhood

‘It took years of being unwell to finally be diagnosed with the worst case of lupus my doctors had ever seen, despite not really knowing anything about it. I had had ten miscarriages between my children, who, would regularly find me passed out on the kitchen floor, the colour of paper. They initially thought it was leukaemia, meningitis, pneumonia, internal bleeding, and kidney and liver problems. I was even close to being put on the kidney transplant list. It was actually a trainee doctor who suggested it could be lupus. The doctor laughed and said, ‘I’ve never seen a case of that in my life, and I doubt you will’. But after doing the lupus test, after around 180 blood tests, it came back as positive.

I went from a size 12-28 in a month

‘On death’s door, the doctor told us he wanted to give me a huge overdose of steroids, to ‘break the lupus up like an atomic explosion’. He said it could kill me, but it worked. After, I went from a size 12-28 in a month, as steroids make you put on weight. It was unbelievable. I had every mirror in the house taken down, and wore huge tents made of two pieces of material sewn together. I was sitting on the bed with my son one day, and he just burst into tears. He looked at me and said ‘mummy I can hear you, but I can’t see you’.

‘Back then, in the 90s, nobody had really heard of it, or knew about it, despite British politician Hugh Gaitskell dying it from it in 1963 just before becoming prime minister. I was so confused and had to research it myself. I had to stop working as I was taking too much time off; one time was seven months when I had cerebral lupus. I was a career driven girl I was signed off as disabled about ten years after my diagnosis, and now receive full disability living allowance.

I have very gritty, sore eyes, which looks like conjunctivitis. I get ulcers in my mouth, up my nose and down my throat, up to 100 at a time.

‘I can look really healthy in-between flares, but even on my best day, I will ache everywhere. And on my worst day, I’m almost dead! I have very gritty, sore eyes, which looks like conjunctivitis. I get ulcers in my mouth, up my nose and down my throat, up to 100 at a time. Any illness I get, I get it twice as bad, because the steroids have destroyed my immune system. My teeth

what is lupus, living with lupus, by
Sue and her husband Mick

are falling out and I recently had a heart attack and stroke, but of course it’s hard to tell if this is my lupus or age.

‘I’ve managed to control it to a point, but I can’t party or socialise like I once could. I’ve lost a lot of so-called friends who thought I was lying when I couldn’t attend their wedding or whatever. But you can’t waste any more energy by not accepting it.

When I was told I was going to die, my husband Mick defiantly said ‘no she isn’t’. He held my hand the whole night, and believe it or not, I could literally feel him willing his strength into me.

‘Above all, the strongest thing you need is a positive attitude, and I’ll tell you why: When I was told I was going to die, my husband Mick defiantly said ‘no she isn’t’. He held my hand the whole night, and believe it or not, I could literally feel him willing his strength into me. In the morning, the specialist did her checks, and said to Mick, “her kidneys are now working 75 per cent. This wasn’t us, this was you”. That’s when I realised a positive attitude really works. Or maybe the lupus just calmed down!’

what is lupus, living with lupus, by‘My eyes and lips swell to four times their size’

Amy Baker, 24, is studying interior design in London and volunteers for Lupus UK. She has a pen-pal system with other young lupus sufferers, and finds social media helpful to interact with others, under hashtags such as #spoonie

‘I can’t live like a normal 24-year-old. I want to be throwing myself into university, going out and socialising, going to clubs and doing everything. But it’s just impossible.

‘I was diagnosed at 15 years old, two weeks before my GCSE exams. My grandmother noticed I had chilblains on my feet, which are like red sores, when I was 12, and then I began getting problems with my eyes and lips. They would swell to four times the size and be so itchy, as well as my stomach, arms and legs. It didn’t really affect me at school, but at the age of A-levels, things got worse.

I feel like rubbish and think I look terrible, but to everyone else I look fine

‘The fatigue is not the type everyone else has. It’s like a really bad hangover with flu but all the time. I

what is lupus, living with lupus, by
When Amy had her first steroid
infusion, age 19

have this along with pain through my nerves, called nerve burn, hair loss, and regular urine infections. I take stomach protectors just because of the amount of medication I’m on, the steroids, anti-malarials, ant-histamine, sleeping pills, and so many more. Like most people I also put on weight from the steroids, although I’ve managed to lose three stone of that.

‘I have to explain to people when they can’t see anything wrong with me. I feel like rubbish and think I look terrible, but to everyone else I look fine. There is a lot of judgement because if they don’t understand it, they question my behaviour. In fact, one day when I really should have been resting because my eyes had swollen, I went to my lecturers, and it was actually nice for everyone to be sympathetic for once. Public transport is particularly hard. Being in London and using the underground, people won’t offer their seat because I look like a healthy 24-year-old, but I’m in pain standing. I feel like I can’t ask, even though I carry a priority seat card, and that’s how lupus causes anxiety.

I’ve written to MPs and Jeremy Hunt but received no support

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Amy’s eyes swell up

‘A couple of years ago my doctor and I battled to get a drug called Benlysta which is proven to be very successful with combating the symptoms. My doctor put in an application for me, but the government and NHS are declining the use. Both my application and appeal were declined. I wrote to MPs and Jeremy Hunt twice, but both letters I received back were exactly the same. I really struggled at that point, because I knew there was a drug that could potentially change my life. I felt as though I had had no help or support.

‘I get scared, but not about how lupus is making me feel. What I get scared about, especially at the moment with just starting university, is wondering if I’ll fall back so much I’ll have to give up. I didn’t work for two years before I came to university, I wasn’t able to. I got to the point I was severely depressed. I was stuck in limbo trying to get into work and it wasn’t working. Before I went to university, I attempted a retail job, a teaching assistant, a jewellery shop assistant, and a coffee barista, all which I couldn’t last more than 3 weeks at. I had to move back in with my mum, my friends were all busy living their lives, and I was so lonely.

Things have improved a lot since then. I accepted that I have a disability, and this opened a lot of doors to support. The support system online is overwhelming. The sense of achievement from fundraising really helps me too, such as a skydive I did this weekend gone.

Click here to donate to Amy’s Just Giving page

what is lupus, living with lupus, by‘I’ve had dozens of fractures in my feet because my bones are so thin’

Tracy Hodgson 42, works for Hampshire County Council. She is a proud auntie and Brownie leader 

‘I was running the checkout line in Waitrose as a trainee manager, aged 21, when I had a phone call patched through to me from my GP. I’d been unwell for about six months, and eventually had a blood test. The doctor couldn’t believe I was working, or driving for that matter, and told me to come to hospital. I was admitted that day with severe anaemia, and the hospital started me on blood transfusions immediately.

I’d had an array of odd symptoms which I had written off as being run-down.  My joints were stiff and painful and I was struggling with things like getting out the bath, dressing and brushing my hair. Work was taking every ounce of my energy, I’d fall asleep in my uniform exhausted as soon as I got home. My hair was falling out & I’d lost a lot of weight from lack of appetite.

It can take seven years for lupus to be discovered

After looking for the cause of the anaemia, my parents and I were told I had lupus. I had no idea what it was, but felt huge relief to have a diagnosis and that it wasn’t leukaemia, as I had heard doctors discussing.

It can often take seven years for lupus to be discovered. As soon as I was diagnosed things made more

what is lupus, living with lupus, by
When Tracy’s hair began growing back

sense. At university, my student nurse suggested the severe fatigue I was experiencing was just stress from moving away from home. As a young child, my mum dressed me in a t-shirt over my swimming costume on holiday, because I would react so badly to the sun. Actually, these symptoms put together with hair loss, painful stiff joints, and extreme fatigue, was my lupus.

My skin was bubbling and peeling

I was determined to continue my trainee programme with Waitrose after my diagnosis. I knew I could prove to them that I was able to complete my training. Even then, only 20 years ago, lupus was seen as a disease with a very poor prognosis. My employers were extremely cautious so I was forced to compromise and continue my training at a slower pace. I persevered and after ten years and successfully becoming an Office and Administration Manager I chose to leave to start a 9-5 job to put my health first.

At my lowest point I was hospitalised with a terrible skin reaction after being put on new medication. My skin was bubbling and peeling on the whole upper half of my body. The drug was stopped & I wanted to go back to work but they didn’t want me, even though I felt capable, until I was fully healed. Then, at the age of 24 I developed Lupus Nephritis, inflammation of the kidneys, and was treated with intravenous steroids and Cyclophosphamide (chemotherapy drug). I feel so lucky that by treating the disease aggressively with cycles of these drugs my kidneys have recovered well.

I can only wear hospital issue orthopedic footwear

Now, 22 years after my diagnosis, I am a long way into my ‘lupus journey’, as you might call it. I have now been on daily steroids over half my life, along with 10 other medications a day. Long term steroid use has thinned my bones in my hip, spine & feet giving me Osteopenia. I can now only wear hospital issue orthopedic footwear, as I’ve had about a dozen stress fractures and three major fractures in my feet from simple injuries. Those are the worst days of my lupus. The injuries have taken months and months to heal, and in the past I have been housebound, in pain and miserable.

I don’t stress about my appearance as I am so grateful to feel better

what is lupus, living with lupus, by
Tracy swims 3 times a week

One of the frustrating elements of lupus is the change it can make to your appearance with skin rashes, hair loss, weight gain and ‘moon face’ from the steroids. Being on steroids for so long has made me gain weight but I don’t stress about this as am so grateful to feel in better health. I swim regularly which is a great way to relax and helps me to manage my weight. Even after a long day I push myself to swim as it will stretch out my body & make me feel better from the exercise endorphins! They say we always need rest but I now know my body well and how much I can do and when I do need to give in and rest.

I am a glass half full kind of girl and generally always look on the bright side. There are compromises to be made, my clubbing days are certainly over! I can’t drive or walk too far and I mainly work at home. I have to be very organised attending regular hospital appointments for monitoring. I don’t want lupus to define me, I want it to be what I have achieved in life. There is most definitely life with lupus, life is what you make it.

For more information on Lupus, visit Lupus UK

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