SUPPORTING LUPUS

We support fundraising for lupus research and treatment

Desiderate donates a portion of its profits to Lupus NSW (which actually offers support for all of Australia). This cause is close to our hearts, as our founder Janine has been living with lupus herself for more than a decade. 

About Lupus

Lupus is an autoimmune disease, where the immune system produces antibodies that cause inflammation, damage and pain. The overactive immune system causes the body to periodically attack its own organs. The cause is unknown, but is believed to be influenced by genes, hormones and other factors. Ninety percent of lupus patients are women. There is no cure for lupus, but medication can be effective in controlling symptoms. Lupus is not contagious, and like cancer, it has different strains. 

Janine’s Lupus story

I was in my mid 40s when I noticed my vision going foggy. My eyesight quickly declined, and the bouts of fogginess got worse, until one day I was out motorbike riding with friends and I insisted on going home. My vision was so poor, I knew I couldn’t be on the road with a motorbike. That’s the moment I knew something was really wrong. 

I saw an optometrist who sent me to the doctor and tests confirmed I had lupus. 

While many people struggle with undiagnosed symptoms for years, I received a quick diagnosis. My symptoms appeared rapidly and soon my hair had fallen out and my memory was terrible — lupus was impacting many organs, as well as my brain function. I couldn’t remember things, which was scary and stressful.

After I was diagnosed, I was in and out of hospital for years. I had tumours in my spine and kidney problems. Doctors told me I’d never walk again, but here I am, still walking. 

These days, I am learning to live with lupus

I live with chronic, constant pain and take a strong daily dose of various medications. I try to limit painkillers, but, they are necessary. The last few years it has been well managed, but you never know when it’s going to flare up again. When you live with lupus, you can seem flaky. It’s hard to commit to events and repeatedly cancel. Lupus is genetic, my daughter and my sister have it too. I worry about my children and grandchildren inheriting lupus from me. 

I’m at the acceptance stage 

I know lupus will be with me for the rest of my life. I have strategies and support systems in place when I need help living with lupus. Because I seem fine when you meet me, people struggle to understand what’s wrong with me; lupus is a complex condition to live with. It helps me appreciate that you don’t really know what’s going on with others. 

Knowing others with lupus makes a great difference; they’re the ones that truly understand. I met a woman in a business group and we got on really well—we clicked. It was only later we realised we both have lupus SLE. We are good friends now, we really understand each other. 

Lupus NSW focuses on education, research and support 

When I was first diagnosed, Lupus NSW helped me enormously. That’s why it’s important to me to give back and support others as they are diagnosed. People living with lupus can access counselling and support, which greatly improves their quality of life. Lupus NSW also invests in research, contributing to important studies into the treatment, diagnosis, prevention and possible cure of lupus. 

We are pleased to support this important cause.