Celebrating 30 years of Fabry Australia with ‘30 Fabry Stories, from the Australian Fabry Community.’
Caitlin Emmerich lives on the east coast of Tasmania and works as a secondary maths teacher. She was diagnosed with Fabry at conception.
“Having Fabry has been a catalyst for a career change and prioritising my wellbeing.”
My Dad was diagnosed with Fabry at age 30 after decades of struggle to find a diagnosis for his lifelong debilitating symptoms. IVF wasn’t popular when I was conceived so my parents and I knew I had Fabry at conception.
I’m really lucky. My Fabry experience has been different to my Dad’s. I’ve been quite healthy. I played a role of carer to my dad, with my mum. He died of kidney failure at age 60 in 2023.
Growing up I’d notice I had a strong aversion to walking bare feet. It felt like scratching nails on a chalkboard. I have trouble feeling temperature and touch.
I’m not eligible for enzyme replacement therapy. The treatment is expensive and has a high threshold. You need to be suffering more. I’m anxious about progression of the condition. There’s a feeling I can’t do much about it. The mental battle is as real as the physical battle.
We need to treat people early, especially younger people, to help reduce the decline of organs. Treatment came too late for my dad.
I’m passionate about my wellbeing and quality of life. I eat well, I do yoga, netball and pilates, I see a naturopath and I get blood tested every year.
Having this condition has been a catalyst for a career change. I studied law and economics but after a few years working as a lawyer I knew it wouldn’t support my wellbeing, so I applied to Teach for Australia to become a secondary school teacher and moved to remote Tasmania.
My hopes for the future are that we reduce the barriers to treatment for more people with Fabry.
I don’t want Fabry to be my only story. I have so much more to my life.