An international survey revealed a significant lack of awareness surrounding the disease known as lupus.
To raise awareness, May 10 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 percent of sufferers are women, few of us know what it is, or have even heard of it.
Indeed, Selena Gomez, 25-year-old pop star, ended her world tour early in August to recover from lupus-related panic attacks and depression.
Raising awareness: Selena Gomez, who has lupus, has been a vocal advocate for sufferers
In the hours after, Google trends saw more than a 1,000 percent spike in searches for ‘what is lupus?’.
A global survey by pharmaceutical company GSK this year also found that 26 percent 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.
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 41 percent 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.
‘Nobody knew what was going on’: Mother-of-two who suffered 10 miscarriages was wrongly told she had leukemia, meningitis, pneumonia and kidney failure – before doctors finally discovered her lupus
Sue Hayes, 67, lives in Surrey with her husband Mick. They have two grown children, Matt and Nicola
Sue Hayes, 67, was told she would die at 38
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.
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 10 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.
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.
The condition forced her onto steroids to control her symptoms, and she went from a size 12-28 in a month
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 10 years after my diagnosis, and now receive full disability living allowance.
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 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.
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 percent. This wasn’t us, this was you’. That’s when I realised a positive attitude really works. Or maybe the lupus just calmed down!
She said she lost a lot of so-called friends ‘who thought I was lying when I couldn’t attend their wedding or whatever’. Pictured: Sue with her husband Mick
‘To everyone else I look fine, but I’m in terrible pain’: Aspiring interior designer, 24, describes agony of being forced to drop out of university as her lupus worsened
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.
Amy Baker, 24, was diagnosed nine years ago, as her whole-body itching got worse and worse
The fatigue is not the type everyone else has. It’s like a really bad hangover with flu but all the time.
I 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.
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.