For the past three years, Cassie Ginns, 24, has been living in agony as her own body relentlessly attacks itself. Here, the South Australian girl explains the horrors of living with lupus – a potentially fatal disease most people have never even heard of.
My battle with my own body started innocuously enough – I was in the bath shaving my legs when I noticed three pink spots on my ankle.
They didn’t hurt so I didn’t worry about them too much and went straight to bed. By the next morning, my feet were swollen and painful – every step I took felt like walking on a bed of nails – and the spots had spread, now covering my legs and stomach.
I was worried but tried not to panic, convincing myself I was having an allergic reaction to my new soap.
I went to work and battled through my shift, feeling worse every minute. The last thing I remember is making a coffee for a customer at around 1am – I must have passed out because the next thing I knew, I was in a car being rushed to the nearest hospital.
My memory of the next few hours is foggy at best – people were asking me my name, my birthdate, but I couldn’t remember a thing. I can only recall thinking, “This is it. I’m going to die.”
After what seemed like hundreds of tests, my doctors were bewildered – my body was shutting down but they couldn’t tell me why.
Cassie Ginns has been fighting lupus for three years.
I spent a few days in hospital before they let me go home but my old life had disappeared. I used to spend my time dancing, jogging and working – now my life was reduced to doctors’ visits, blood tests, crying and sleeping. I tried to keep working but could barely make it through a shift and regularly called in sick because I was in too much pain. The bills started piling up and without a wage, I couldn’t afford any medication to ease my suffering.
Before long, I fell into a black hole of depression. I wanted to die, convinced my life was over.
After three seemingly never-ending months, I got a diagnosed: I had lupus, a rare autoimmune disease which meant my body was literally attacking itself.
Any stress could cause a flare up, as I discovered six months later when I ended my six-year relationship. The strain nearly killed me. I went into renal failure and ended up in hospital having a platelet transfusion and kidney biopsy.
I knew I had to change my life or risk it being taken from me by this disease and I’m thrilled to report that two years on, I’m like a different person.
I’m in a new relationship with an amazing man and I’ve got some incredible friends – in short, I’ve surrounded myself with a network of people who understand my condition and support my through the hard times, of which there are many.
They don’t complain if I leave a party early, that I drink water instead of champagne. They’ve taught me that I shouldn’t be ashamed of having a disease I can’t control.
Singer Seal is a famous lupus sufferer.
Lupus has changed my life but not necessarily for the worst. Before I had lupus I took things for granted – I didn’t appreciate my life. Now, every moment is precious. Every day I wake up feeling okay is a blessing.
Sometimes I still cry with pain, want to scream in agony, but the support of the people who love me gets me through.
Life with lupus isn’t easy – it’s unbelievably hard. I’m constantly tired and sore, my joints ache, my memory gets foggy – even washing my hair is tiring. I have three or four naps every day and drink six coffees a night at work just to get through a shift but I’m alive. I can walk. I can talk. There are so many people worse off than me.
I have lupus but lupus doesn’t have me – it may take my body but it’ll never take my soul.
To help Cassie and other Australian lupus sufferers, you can visit the Fighting for a Lupus Cure Facebook page and the Auto Immune Disease Fighters page.
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