Dublin - Aching joints, chronic fatigue, butterfly-shaped facial rash, hair loss, mouth ulcers, organ damage... these are just a few of the symptoms that could point to an autoimmune disorder called lupus.
It’s often referred to as a woman’s disease as it affects about nine times as many women as men. It’s also most common among fairly healthy women of childbearing age, between 15 and 40.
I most certainly fell into this bracket when I first started showing symptoms a few weeks after the birth of my first baby.
I woke up one morning with what appeared to be a stiff shoulder, but this stiffness spread rapidly through my body and by the following evening I needed help to walk the three steps down into my kitchen.
When my husband had to help me stand up from the toilet, we knew there was something really wrong. Before this, I was extremely healthy and fit, and rarely had cause to even visit the doctor.
Luckily my GP took my pain seriously and ordered a series of blood tests. These revealed that I had the markers for a connective tissue disorder, as well as high levels of inflammation, and I was referred to a rheumatologist, which is where I started learning about an exotic-sounding disease called lupus.
Lupus can be divided into two forms: discoid lupus erythematosus, which affects the skin and is characterised by a butterfly-shaped rash on the face (the marks on singer Seal’s face are due to scarring from this condition), and systematic lupus erythematosus, which is internal and can affect virtually any organ in the body.
Patients can have one or both forms, with systematic lupus erythematosus considered the more serious. The severity of symptoms can differ from person to person, with some having only mild symptoms and others experiencing frequent flare-ups that can cause severe complications with vital organs.
“Put simply, lupus is a chronic autoimmune disease,” says Dr Suzanne Donnelly, rheumatologist and director of clinical education at the School of Medicine and Medical Sciences, University College Dublin.
“Almost any tissue in the body can be its target, and this is the important distinguishing feature of lupus from other autoimmune diseases in which maybe only one organ can be the target. The common organs it can affect are the skin, the joints, the lungs, the brain and the kidneys.”
Early diagnosis and correct treatment are vital for every sufferer, especially if the organs are under attack.
Ciara Roper, 30, began having symptoms in her last year of school. It’s taken the best part of a decade to get her symptoms under control.
“I started having symptoms when I was 17, but was not diagnosed with lupus until I was 18,” she says.
“I had flu-like symptoms at Christmas and was put on an antibiotic, but was then admitted to hospital where a blood test revealed that my haemoglobin level was at two.
“When I was discharged and they reduced my steroids, I got even sicker, with weakness and dizzy spells, as my haemoglobin levels kept dropping, so I was in and out of hospital.”
On one hospital visit, Roper was diagnosed with anaemia. “It was only when my fingers started swelling and I was up for a monthly check-up that they did a blood test and diagnosed me with lupus.”
This diagnosis came out of the blue for Roper, who, like me, had been a healthy and active.
“I couldn’t believe it. I was so healthy and the sickness came on so suddenly.”
Roper’s case points to the difficulty in diagnosing lupus.
“Lupus can be quite difficult to diagnose, even when it’s in the fullness of the disease,” explains Donnelly.
“Because it’s relatively rare, it can be difficult for a GP to spot, and if it’s affecting just one part of the body, it can be difficult to relate it to lupus.
“There is also undoubtedly a period before the disease becomes noticeable, when the patient is having symptoms such as a few mouth ulcers or feeling tired all the time.”
Rheumatologists use a combination of clinical features, symptoms and blood tests to come to a diagnosis, and these, explains Donnelly, are being refined. But early diagnosis and treatment are essential to help contain the disease and to reassure the patient.
“The majority of our patients are young, healthy females, and they may need reassurance about what’s wrong with them. Some patients cry when they are diagnosed, not because they are upset at the news, but because they are relieved that they know what is wrong when they haven’t been able to pinpoint why they are so tired.
“Fatigue – especially when it is accompanied by aching, sore joints – is one of the most debilitating symptoms of lupus, particularly when you consider that lupus most commonly affects young, healthy women who lead, or want to lead, busy lives with jobs and families, but it’s also the hardest symptom to measure.”
Roper believes that the lack of knowledge about the disease certainly contributed to the complications she has experienced with lupus. These have included clots on the lungs and the brain, shingles, and meningitis.
“About two years ago, I had a bad spell. I got septicemia in my legs and had to get skin grafts. I spent six months in hospital and two months in rehab to learn to walk again. Thankfully during that time, the doctors changed my medication and finally the lupus was brought under control.”
It has been a long, hard road for Roper, who lost her twenties to lupus, but finally she is at a point where she can imagine leading a normal life.
“People don’t know how bad it is until I sit down and tell them my story. The thing about lupus is that you don’t look sick a lot of the time. But now I’m (in hospital) only every three months, I feel like a normal person again.”
So why is lupus attacking otherwise healthy women?
“People are definitely born with some sort of genetic pattern that makes them more prone to lupus,” says Donnelly.
“There is then some sort of event that could trigger this off, like an infection or hormones. The question of why it affects more women than men, and the role that hormones could play, warrants more attention.
“Lupus is unusual in that pregnancy and post-pregnancy can trigger a flare, whereas most other autoimmune diseases calm down during pregnancy, and it’s not that uncommon that pregnancy and post-pregnancy can trigger lupus.”
Lady Gaga has revealed that she has the markers for lupus, but does not have symptoms, while singer Toni Braxton has spent time in hospital with lupus complications and has said the disease was the cause of her uncle dying at 19.
Lucy Vodden, the inspiration for The Beatles’ song, Lucy in the Sky with Diamonds, died of complications related to lupus.
Thankfully the diagnosis and treatment of lupus have improved, and once the disease is under control patients can lead a fairly normal life. There is no cure yet, and Donnelly says that the nature of the disease means it’s vital for patients to be monitored by their rheumatologists.
“Everyone is different and you need to be vigilant. You need to be seeing your rheumatologist on a regular basis, determined by how your rheumatologist thinks you’re doing. If you’re having a good spell, your rheumatologist may want to see you only every six to eight months, while other times it could be every six weeks.”
The good news is that research into lupus is continuing, and a number of treatments have been developed for lupus, although most of them are in clinical trials.
As for me, I consider myself one of the lucky ones. Steroids treated my first symptoms successfully, but I suffered a number of flare-ups until I was put on Plaquenil, an anti-malarial drug that is also a common treatment for lupus.
Thankfully I responded well to Plaquenil and although I continue to have flare-ups, the severity has decreased.
It’s taken two years and another pregnancy to make me realise that good health is everything in life, and I now know to keep myself as well as possible – and that means resting if it flares up, and keeping myself away from infection as much as possible.
Like Roper, I have found that support, from my family and from fellow sufferers, is vital.
“I thought I was the only one in the world with this thing until I joined a support group because nobody around my area knew anybody (with lupus) or had heard of it,” says Roper.
“I find the support great – just being able to go on to their Facebook page and read of people who have the same things as me, being able to ask questions and even advise others at times.” – Irish Independent