Saturday 29 November 2014

The butterfly effect

Affecting mainly healthy young women and often characterised by a butterfly-shaped rash on the face, lupus can be a debilitating and upsetting chronic disease, as Penny Gray found out two years ago

LIVING LIFE TO THE FULL: Thanks to a treatment plan for their lupus, both Ciara Roper (above) and Penny Gray (left) are now finally able to get back to living full and normal lives. Inset main, Toni Braxton suffers from lupus while Lady Gaga says she has the early markers of the disorder

Aching joints, chronic fatigue, butterfly-shaped facial rash, hair loss, mouth ulcers, organ damage . . . Just a few of the symptoms that could point to an autoimmune disorder called lupus.

Still relatively rare in Ireland (an estimated 1,200 to 1,400 Irish people are treated for the chronic disease), it's often referred to as a women's disease, as it affects approximately nine times as many women as men. It's also most common among relatively healthy women of child-bearing 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 very 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 on to a rheumatologist, which is where I started learning about an exotic-sounding disease called lupus.

Immune issues

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 Discoid LE), and Systematic Lupus Erythematosus (SLE), which is internal and can affect virtually any organ in the body.

Patients can have one or both forms, with SLE considered the more serious. The severity of symptoms can differ from person to person, with some having only mild symptoms and others experiencing frequent flares that can cause severe complications with the vital organs.

"Put simply, lupus is a chronic autoimmune disease," says Dr Suzanne Donnelly, consultant rheumatologist at the Mater Misericordiae University Hospital, Dublin, and director of clinical education, 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 affects are the skin, the joints, the lungs, the brain and the kidneys."

Early diagnosis and correct treatment is vital for every sufferer, especially if the organs are under attack. Thirty-year-old Ciara Roper began having symptoms during her Leaving Certificate year in school, and 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 Sligo General Hospital where a blood test revealed that my haemoglobin level was at two.

This diagnosis came out of the blue for Ciara, who, like me, was a healthy, active, young woman up until then.

"The first thing I asked was, could I still play camogie? I couldn't believe it, I was so healthy and the sickness came on so suddenly."

Ciara'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 Dr Donnelly.

Irish Independent

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