Marisa Zeppieri-Caruana is the Founder of Lupus Chick, a non-for-profit social enterprise which advocates for those with lupus and other autoimmune conditions. At 43-years-old, Marisa has been hospitalised over 35 times due to complications from lupus, including partial sight loss, a brain aneurysm, strokes, and a pulmonary embolism.
Lupus UK estimates that up to 50,000 people in the UK have lupus (about 1 in 1000) and that it’s 10 times more common in women than men.
For Lupus Awareness Day, Marisa shares her story about the realities of living with an incurable, chronic condition, from finally receiving a diagnosis in 2001, to creating an unstoppable community of people with autoimmune diseases and writing Chronically Fabulous: Finding Wholeness and Hope Living with Chronic Illness. This is her story…
I grew up in the eighties when you never heard the word ‘lupus’. I was brought up by a single mum and we didn’t have health insurance. When I was eight-years-old, I had very clear lupus signs, but the doctors always brushed it off and wouldn’t do further testing.
After we moved from New York to Florida, I started to get really bad sun rashes, fevers, fatigue, and spent every day in a lot of pain. My mum suggested that it could be growing pains. At that stage, we didn’t know that sunlight can be one of the biggest lupus triggers. This went on throughout my teenage years. Having gone to college to study to become a nurse, I still struggled with the pain, but I learned how to navigate it better.
When I was 23 years old, I was hit by a drunk driver when I was crossing the street. This was a huge physical trauma, which meant I had to spend a year in recovery. During this time, all the weird symptoms I’d experienced over the years all came out at once. As well as having fevers and rashes, I also had a small stroke. The next thing I knew, I was being diagnosed with lupus.
Having been diagnosed with lupus, I had no idea what it was (or what I was in for). I asked my doctor to prescribe me some medicine so that I could just – you know – get rid of it, and move on with my life. That’s when I found out there’s currently no cure for lupus – I was going to be struggling with it for the rest of my life.
Lupus is a chronic inflammatory autoimmune disease. It typically affects your lungs, kidneys, heart, brain, skin, and blood – although it’s different in every single person. For me, it mainly impacted my lungs, brain, blood and heart. After I left the hospital (following the accident), I went to rehab to learn how to walk again. During this time, my lupus was not under control: I had a couple of more small strokes, and I wound up having a blood clot in my lung.