Living with Lupus and marking World Lupus Day

Friday 10th May is World Lupus Day. Lupus is not a well known illness in Ireland, yet there are so many people suffering with this incurable auto-immune disease. Lupus Group Ireland provides much needed support to those Irish people suffering with lupus, and raises much needed awareness of the illness in Ireland.

It was initially established in November 2011 as a Facebook page reaching out to fellow sufferers in Ireland. It has since grown to become a registered Irish charity run entirely on a volunteer basis by a committee and team of volunteers who all have lupus and work and study full time alongside their commitment with Lupus Group Ireland.

Lupus is an auto-immune disease whereby the body's immune system mistakenly attacks healthy tissue which leads to long-term (chronic) inflammation. Lupus can affect men and women of any age, but the majority of cases are found in young people, in particular, young women. Nine out of ten sufferers are female with the highest incidence occurring between the ages of fifteen and forty five.

Lupus can manifest itself with a multitude of symptoms. For most people, the condition is mild, affecting only the skin and joints but for others it can be severe and can involve the kidneys, heart, lungs and brain. One of the most prominent symptoms is an extreme tiredness that won’t go away no matter much rest the lupus sufferer gets.

Importantly, even mild lupus can have a serious physical and psychological impact on the daily life of the person who is affected. Lupus is very much an ‘invisible’ illness in the sense that there is a lack of awareness in the general public about the disease and many people with lupus may look well on the outside whilst inside tells another story.

This means people with lupus may suffer in silence as people just don’t understand.. This can impact upon social relationships and mental health. Lupus is a difficult disease to diagnose. Sometimes it is so difficult that patients feel isolated and wonder if the illness is "all in their head".

Some people have gone years without a diagnosis; such is the lack of awareness and difficulty of this condition. The majority of sufferers require constant medication to manage their symptoms, and the side effects of some of these medications can impact further upon physical appearance.

Jessica D's experience of living with Lupus.

"It all started Easter 2012, a month before my 17th birthday. I started to develop a weird rash on my arms which was blotchy and boiling hot to touch. My mam made an appointment to see a doctor but the GP just gave me cream. As the weeks progressed I started to develop a sharp pain in my wrists which I found hard to deal with as it was my leaving cert year and I had grinds every day after school. I went back to the GP and he gave me steroids.

It all got much worse on the night of my birthday! I was out for a meal with my friends and when I came home I found it extremely hard to get ready for bed as my ankles and knees had developed the sharp pain much like the pain in my wrists. I was crying with the pain, so my mam decided to bring me to A&E. We waited 13 hours to see a doctor as my symptoms weren't deemed as serious as others. After being seen I was sent home as nothing showed up in my tests and I was told to go back to my GP. I was then told that I had to see a rheumatologist. The waiting list was 6 months in my local hospital so my parents decided to go private.

As the week progressed, waiting on my appointment, my fingers became swollen and all of my joints where in serious pain. At this point I found it hard to dress or to even walk down my stairs. The morning of my appointment I was in so much agony that my mam had to help me get in the bath and get dressed. She had to link me everywhere because I couldn't walk.

The rheumatologist was nice and she commented on how swollen my joints where. She sent me for testing and after a few weeks of agony on steroids I was getting worse by the day. I found it so hard getting through the school day. My friends would carry my bag and l would have to call my parents to pick me up. I remember one day in grinds I couldn't get up off the seat and my friend had to help me out of the room. I got really dizzy and my head started to spin.

I just about got through my leaving cert but as the summer began it got much worse I started getting dizzy and feeling like I wanted to vomit and at the same time every day I would become really cold and would shake furiously. I would just have to sit under a blanket until I became boiling hot and burn up. When I went back to my rheumatologist she decided that she found nothing in my bloods to say that I had lupus, as I had questioned her about this.

I went to my GP clinic and had my X-rays. The next day I woke up and the rash I had originally returned but as the day I progressed it spread down both of my arms and was even more blotchy then it originally was.

The next day I was in work and I became really shaky and started my normal hour of shivering so I sat in the office to recover. It got so bad this time I started to throw up. My mam collected me and brought me to A&E. This time we were 10 minutes waiting as on this occasion my temperature was sky high and my blood pressure was really low. They thought I had meningitis and began testing.They tested me for everything and eventually after a skin biopsy, I had my answer. It was lupus.

I was told I would be sent home, but on that Friday I started getting a really bad headache so they decided to run more tests and keep me in. The next day had to be one of the worst days of my life. I woke up unable to lift my head off the pillow. My head was in so much pain it felt as if it was on fire. I started my usual shaking and had really bad thrush in my mouth. The nurses were great looking after me and my worried parents.

I don't remember the rest of what happened next. I was told that I started hallucinating and I vaguely remember a team of doctors in the room asking me my name and questions about myself. I found it so hard to talk. The next thing I remember was waking up with an oxygen mask on and a drip in my arm. I had been asleep for hours after my ordeal. My parents were at my bedside and told me what had happened.

The second week passed and although I was exhausted I couldn't get over the recovery I was making. I could actually get up without pain. I was back walking around and moving about so they decided to let me out. It took weeks of recovery at home and realising that I had lupus.

I came across the Lupus Group Ireland Facebook page and it helped me so much as I found people going through exactly what I was, and they gave me advice when I needed it. When I first came home I really didn't think I'd be where I am now. I went to my debs two months later and got into college and I went to Florida for Christmas after the ok from my doctor. The only thing I'm not allowed do is go out without sun cream or to go out uncovered, I have to take it easy when I feel tired but other than that I'm doing great.

Lupus has made me a different person. It has made be become more grateful for my brilliant family and friends who have been there for me every step of the way and it has made me grateful for my body which I have learned that I need to take more care of."