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Trapped in my body – the faces of lupus

8 May 2013

Trapped in my body – the faces of lupus

Arthritis New Zealand Chief Executive Sandra Kirby today asked people to mark World Lupus Day this Friday 10 May.

“Lupus is a form of arthritis that affects joints, muscles and other parts of the body, but it can also affect the skin, kidneys, lungs, heart, nervous system and blood and in particular the immune system.”

“It is an auto-immune disease, which means that some people with lupus develop antibodies that attack healthy tissues. As a result, different parts of the body become inflamed and this causes pain and swelling. Lupus can mimic other diseases and can be difficult to diagnose. Which makes it all the more important that we raise awareness of this often debilitating yet so often undiagnosed condition”, she concluded.

Arthritis New Zealand is a national organisation that raises awareness of the more than 140 forms of arthritis, advocates for those living with arthritis; funds research, and provides support through information and advice. There are more than 530,000 New Zealanders living with arthritis.


Note for editors:

· Please find below unabridged stories from Olivia, Rebekah and Lani, which describe their experiences of living with Lupus, as told in their own words. They are all available for interview, and we are happy to facilitate this. Contact Arthritis New Zealand if you would like to speak with any of them.

· A fact sheet about four international days during May that highlight various forms of autoimmune arthritis is also attached.

Olivia’s story

When I close my eyes I envision a vibrant, fair skinned twenty two year old woman. A woman with blonde hair, sparkly bright blue eyes, an unforgettable warm beaming smile. She is dressed in a colourful dress. She is the kind of girl every girl wants to be. Loved by all, always smiling and has this tremendous ability to fight adversity.

When I open my eyes I see a pale faced twenty two year old. A woman who has battled and fought for survival since the tender age of three. Her eyes are red and puffy from the tears that won’t stop falling. Her eyes closed off to the world, closed tight to hide the pain. Her once prominent smile has dissolved into gritted teeth. Her breath is shallow and fast. Her face round and puffy from the increase of prednisone. Her hands shake her heart races as she looks down at her once functioning body. She struggles to straighten her hands. The sight of her finger joints being stretched and pulled out of place from years of tortures’ pain. Fingers that should be straight are bent at sickly angles. Perhaps the hands of a 90 year old lady? Surly not a 22 year old? The next unsightly joint is the 18cm scar on her knee. Perhaps from a shark bite? Surey not damage done by her own body!

Pain is everyone’s nightmare but what happens when pain is your every day companion?

Hope that her mobility will return.

Hope the medication will provide relief.

Hope her smile will return.

But mainly hope that tomorrow will be better.

Rebekah’s story

I became sick with glandular fever at age 13, and from this point in time, I have suffered with ill health persistently. Due to developing severe Raynauds, a paediatrician referred me to a paediatric Rheumatologist. I was also getting other symptoms at the time such as chest pain, abnormal heart beat/rhythm etc.

In 2009 (late) – 2010 I was diagnosed with Lupus,

In December 2011 I had my first seizure late at night whilst travelling with my father up to a Doctor’s appointment, February 2102, I was diagnosed with Epilepsy.

However, it is thought that this epilepsy was part of the Lupus. My short term memory was very bad and could not remember things day to day. I was studying my masters in science at university however I had to get an extension as I could not concentrate or do my work properly. I still do have migraines on a daily basis. I have what I call “body jerks”, which are really just an arm or a leg just flicking up or out or moving without conscious knowledge or effort (it is involuntary).

We have been told by Doctors in NZ that I have Neuropsychiatric Lupus

I cannot live independently

Lani’s story

Lani and Nana
I was finally diagnosed with Lupus the beginning of 2006 at that tender age of 16, although I had been experiencing symptoms from around mid 2005. Leading up to my diagnosis and before it actually I was a relatively “normal” teenager – you know, hated the world thought I knew EVERYTHING, all that kind of stuff. I also had a passion for sport, in particular – Rugby. I loved it!! 2005 I made the Women’s NPC team and school Representative team. It was pretty much my life to the point where I actually noticed something was wrong with me at pre-season rugby trials the beginning of 2006!!

In a matter of 24 hours I went from running 80 minutes on a field to not even being able to walk 8 steps without being in pain. I had big welts and lumps on all my joints. I had cut like lesions on the palms of my hands and the bottom of my feet & that awesome butterfly rash. Needless to say my family started to freak out. It took a good 3 solid months, few tantrums and endless tears to properly diagnose me & although it was shocking news it was actually a relief. My Nana had Lupus when I was growing up and so does her sister – but here’s the catch, my nana and I aren’t blood related. My Mum was adopted at birth. So it kind of makes for some funny stories when I tell people I have lupus, I just tell them My nana and Aunty Jill kissed me too much when I was a baby and gave me their powers.

My Lupus started and affected my joints and my skin mostly. I was started me on Methyl prednisone. 3 pulses, every three months or if I needed it to be earlier then I could (majority of the time I could never last three months without a flare). I also have daily oral meds which are still the same to this day. My School was supportive and my mum being a teacher helped also, and the fact I come from a very family orientated town so once the word was out the support come flooding in. If I couldn’t last at school I could sleep in classes and take the work home. If I missed school they sent work home. I passed NCEA 2 and 3 and spent most of those years in hospital. I am very thankful for all the support that was given to me at school.

Around the beginning of 2007 doctors started noticing my kidneys were showing some signs that my Lupus could be on its way. Then I started to retain all fluid, I was rushed back to hospital. It was pretty horrific, my whole body was a balloon and it was getting bigger and bigger. So with some careful consideration (I hope) they decided to start me on Cyclophosphamide, if you don’t know what Cyclo is. It is a mild form of Chemotherapy.

I absolutely hated it, I was sick all the time and by the time I had gotten over the sick and the headaches it was time for another pulse! I had cyclo every four weeks for 2 years and before they stuck that poison in my arm I’d have one pulse of methylpred too. Even though I hated every moment of it, it actually worked. I went in to total renal remission but without consequences.

During my cyclo time I also had a lot of trouble with colds, flu’s, and infections. More so than before too! I even ended up in hospital from a bruise that turned in to a blood infection- an hour later I would’ve been dead! It took 5 months for that one to heal.

So, after putting 3 of my most hugest passions in life on hold (cause I’m not giving up on them just yet) and gaining 70kg (yes that’s right 70kg) where am I at now? I am able to keep my lupus stable with oral meds but I do have one methyl prednisone pulse a year just to top me up as I do run out of juice. I do push my limits a lot. But I still go to hospital if I have any of the following Oral meningitis flu or colds, blood infections or pain seizures.

Fact sheet: Acknowledging the harsh realities of the different faces of arthritis in May

Most people think ‘arthritis’ is one disease and they think of osteoarthritis, which can be simplistically described as ‘wear and tear’ of the joints. And osteoarthritis is certainly the most common form of arthritis.

We need to focus on the harsh reality of an arthritis diagnosis for more and 530,000 New Zealanders. There are over 140 different forms of arthritis, and a number of these fall into the category known as an ‘autoimmune’ condition. These are conditions that are caused when the body’s immune system attacks its own tissues. Antibodies, which would normally ward off infection, fight one’s body, causing inflammation, pain (which can be extreme), and affect the whole body, including organs.

There are many forms of autoimmune arthritis, the most common being rheumatoid arthritis, which is also the third most common form arthritis in New Zealand behind osteoarthritis and gout.

There are four international days during May that highlight various forms of autoimmune arthritis.

4 May is World Ankolysing Spondylitis Day.
10 May is World Lupus day
12 May is International Fibromyalgia Day
And 20 May is World Autoimmune Arthritis Day

4 May is World Ankolysing Spondylitis Day

Ankylosing Spondylitis (AS) is a type of arthritis that mainly affects the spine, causing ongoing inflammation of soft tissues around the spinal bones (vertebrae). Over time, the process of spinal inflammation can lead to fusion of part of the spine and sometimes the pelvis. We highlight this by using a ‘rusty spring’ metaphor.

Symptoms usually develop between the ages of 15-35, rarely older than 40 years and men are generally more severely affected than women. The reason for this is unknown. About half the risk of developing AS is genetic, meaning AS often runs in families. The most common symptom of AS is pain and stiffness in the back and neck, which often result in sleeplessness. And people with AS often experience a form of eye inflammation called uveitis and can develop an eventual loss of spinal flexibility.

Diagnosis is usually made following an assessment of symptoms, physical examination, blood tests, X-Rays or MR scans. Although there is no cure for AS, it can be treated, and the condition can be well managed.

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