Did you know haemochromatosis is one of the most common genetic disorders with one in every 200 Australians sharing this disease? I certainly didn’t when I was diagnosed with haemochromatosis almost a decade ago.
Hi, I’m Joanne and welcome to Iron-ic Wellbeing, a collection of stories, recipes and tips on living your best life with haemochromatosis.
In short, haemochromatosis is an inherited disease that causes the body to absorb more iron from food than necessary, resulting in a build-up of iron stores in the body (primarily in the liver, pancreas, heart and joints) which can cause serious health conditions if not treated. You can read more about haemochromatosis here.
I’m on a mission to raise awareness about haemochromatosis in Australia (and the world, for that matter), to inspire others to take responsibility for their health and to live the best life they can whilst managing this disease – be it through cooking wholesome low iron meals or proactively managing their wellbeing. And yes, my recipes are so delicious, nutritious and easy that even non haemochromatosis sufferers will want to make them part of their weekly repertoire.
If you want to find more about haemochromatosis, try out healthy low iron meals and learn practical tips you can adopt each and every day to live your best life whilst managing this disease, then this website is for you!
I’m a full time corporate warrior, emerging yoga enthusiast, tea and coffee devotee, ardent book collector, lover of the written word, passionate home cook and lifetime nurturer.
In January 2015 I started Iron-ic Wellbeing as a creative outlet for my inner child, which always aspired to be a journalist, AND as a vehicle for educating people about haemochromatosis.
Whilst my career has taken me in a different direction, I have always wanted to write, but felt I had nothing important to say.
I was diagnosed with haemochromatosis some time ago now, however it has only been in the last little while that I’ve accepted the seriousness of my disease and taken responsibility for my health and wellbeing. I’ve been able to find medical texts on haemochromatosis (mostly out of the US), but haven’t been able to find an online support group with which to connect and share experiences on the day to day life of someone living with haemochromatosis. It was in discovering this void that the idea for Iron-ic Wellbeing emerged, and along with this the realisation that I did in fact have something very important to write about and someone very important to connect with – you, dear reader!
In my early 30’s I hit a wall. I was working full time in project management, my life was full and there was never a lot of down time, but that was how I had always rolled.
Despite being used to (and relishing) the adrenalin of a fast paced life, I felt I wasn’t myself – I was always tired, had a string of colds I just couldn’t shake and after a day in the office you would find me horizontal on the couch.
A trip to the doctor and several blood tests later determined that I had hereditary haemochromatosis – or to be more specific, I had a defect to my HFE gene which regulates the amount of iron absorbed from food (with the Cys282Y mutation inherited from both my parents).
So followed a series of venesections (blood donations) in an attempt to reduce the level of iron in my blood. An easy fix, and one I am embarrassed to admit I didn’t take seriously or conduct regularly. Over the course of the next 5 or 6 years I checked in with my doctor spasmodically, visited pathology even less regularly and reduced my blood donations to almost one a year, not nearly enough to manage my disease.
Enter Wendy, a lovely nurse who one day visited my work as part of its corporate health initiative and asked “what are you going to do when you can’t work like this anymore?”. This was a shot from the blue – I had never contemplated that the constant fatigue and aching joints I had grown used to could one day prevent me from living the life I wanted, doing a job I loved and from which I essentially gained a large proportion of my identity. It was at that point I decided to get serious about my disease, my health and my wellbeing. I had to own “it” before it owned me.
So here we are today – I’m back on track having bi monthly venesections, I’ve sought out pretty much every book on haemochromatosis (there are not that many to begin with) and I’m on a journey to educate myself as to the treatments, dietary rules, supplements and best exercise for someone living with this disease – and I have never felt better – nutritionally, physically or spiritually.
What Can You Do?
I’m so grateful to be able to share my passion for haemochromatosis, food and wellbeing on this blog and, importantly, to hear your stories too!
Please help me raise awareness of haemochromatosis by reading more about this genetic disease on my Haemo What? page. If you think you may have some of the symptoms listed, then please get tested! If you have a family member with the disorder, testing is recommended, as early detection of the disorder can prevent permanent damage.
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Wishing you love, laughter and low iron!
Joanne is a full time corporate warrior, emerging yoga enthusiast, tea and coffee devotee, ardent book collector, lover of the written word, passionate home cook and lifetime nurturer. She started Iron-ic Wellbeing in 2015 as a vehicle for raising the profile of haemochromatosis – a genetic iron overload disease which affects one in every 200 Australians. Her weekly blog update contains stories, recipes and tips on living your best life with haemochromatosis, all delivered from the perspective of a 40+ female adapting to this disorder.