My name is Claudia, I am from Wollongong, New South Wales. In 2013, I was diagnosed with an autoimmune disease called scleroderma that, on average, affects 6,000 Australians. This is where the body produces too much collagen, damaging the connective tissue causing tightening of the skin in all areas of the body. There is no cause or cure for the disease and life expectancy is 10-15 years from diagnosis, depending on the severity of the disease and if internal organs are damaged. I had experimented with a number of medications to help reduce my symptoms, but none of them worked.
I struggled to adjust to my current life living with the disease. My body deteriorated very quickly. My skin became very hard and stiff, impacting my mobility and quality of life. One afternoon, I was on my way home from work and the train pulled up at my stop. I got up from my seat to walk down the stairs when I lost control of both knees and tumbled forward, landing on my hip. Months later, I am unable to bend my elbows straight or get out of bed without support. I was constantly calling in sick for work. I had trouble lifting my arms over my head. I was unable to bathe, walk, dress myself or even make a cup of tea. I was broken and damaged. I discovered a number of physical skin changes to my hands, face and body that I was certainly not prepared for.
I felt trapped in my foreign body, so disconnected with my physical appearance, while trying so hard to put up a good front. I was so overwhelmed with my current state. I suffered from anxiety, self-doubt, vulnerability and feeling less desirable as a young woman. I felt betrayed by my own body.
As my battle with scleroderma continued, I experienced the loss of identity, quality of life, independence and general wellbeing. Then, in 2015, I was selected as a suitable candidate to participate in a stem cell transplant trial in Sydney to reverse my condition by 50%. I re-evaluated my life priorities and, the decision to proceed with a stem cell transplant to regain my quality of life and independence back despite all of the risks, soon became a rather simple and easy decision to make. In the midst of it all, my faith was tested to see how much I can truly handle.
Since, I have written and published an autobiography to help raise awareness about the disease, painting a vivid picture of my life prior to my diagnosis, my medical journey with chemotherapy and my path to self-discovery and acceptance. My journey is about my strength, determination and power to find my way forward. I wrote this book so that people can understand the ins and outs of the disease and are prepared for the unexpected. It is a source of information and a guide for understanding the manifestations of scleroderma based on real life experiences, what it is like living with a life-long illness, chronic pain and how I managed to regain my independence and quality of life back.
You can purchase a copy of ‘A life with Uncertainty’ here.
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