This week I became a Volunteer Advocate with Haemochromatosis Australia, a role I take very seriously given the valuable work this not for profit organisation does to promote awareness in the community about haemochromatosis in the face of very little government funding.
One of the key “take homes” for me arising from my inaugural Volunteer Advocate meeting was the importance of simply talking about our disease. Have you ever noticed that when you hesitantly talk to someone about something you think they’ll have little interest in, invariably you find they actually know something about it and are quite happy to continue the conversation? Haemochromatosis is just like this! Since starting Iron-ic Wellbeing I have been constantly amazed at just how many other people have, or know someone who has, haemochromatosis and they also genuinely want to know more about our disease – what it is, how you get it, how you treat it and what the prognosis is. Unfortunately, and despite this, haemochromatosis is still one of the most under-diagnosed diseases, which is just so unfair.
For those movie buffs amongst us, you may be familiar with the work of director Paul Cox, including his recent release Force of Destiny which screened at the Melbourne International Film Festival last month. Force of Destiny is about a well known sculpture, Robert, who is diagnosed with liver cancer and is subsequently given 6 months to live until, against the odds, he is placed on a transplant list. During this time Robert meets and falls in love with Maya, whose uncle also has cancer. I won’t spoil the ending for you…
What you may not know, however, is that Force of Destiny is a highly personal story for Paul, who had a life saving liver transplant 6 years ago after being diagnosed with liver cancer stemming from haemochromatosis. Unfortunately, like so many, Paul had never heard of haemochromatosis until he was diagnosed with liver cancer, and sadly he has been diagnosed with cancer once more. We wish him well.
It is the futile and often unnecessary loss associated with a late diagnosis of haemochromatosis which angers me the most. In our day and age, with so much information at our finger tips and social media part of our very existence, how is it that we still have trouble getting the word out about haemochromatosis? Why aren’t more people taking this disease seriously? Why are people still being diagnosed too late, with resulting irreversible damage?
My one simple, yet seemingly challenging, goal as part of being accepted into the Volunteer Advocate network with Haemochromatosis Australia is to promote awareness of this disease to ensure early diagnosis and proactive treatment. Imagine if every person diagnosed with haemochromatosis, or family and friends of people with this disease, told just five more people about haemochromatosis, and those 5 people told five more people and so on. We could soon find ourselves in a world where Force of Destiny was a historical drama rather than a too frequent and devastating real life story.
Since haemochromatosis is an inherited disorder, the first conversation we should all be having when diagnosed is with our family. I still shake my head about the time I advised my mum I had haemochromatosis and she informed me that other family members also had the disease (sorry mum!). I had no idea we had any genetic disorders in our family, so it was great to finally find out, albeit after the fact!
If you are the first person in your family to be diagnosed, then you do have a responsibility to alert other family members about the importance of being screened for the disorder to ensure they too stand the best chance of early diagnosis. Haemochromatosis Australia make this task easy for you by offering a simple one page Letter to Family Members to explain the basics about haemochromatosis and what the next steps should be. You can download a copy here.
Every person diagnosed with haemochromatosis has a responsibility to spread the word about this hereditary disease, particularly given it is so prevalent in society and significant damage can be averted with early intervention, regular venesections and maintaining a healthy lifestyle. Thankfully those of us who are diagnosed early are not overly restricted in our dietary requirements, and the best thing we can do is to ensure we eat loads of nutrient dense foods, just like my Rainbow Salad with Ginger Dressing. This salad is not only super delicious, but packs an antioxidant punch and is bursting with so many immune boosting and detoxifying phytonutrients it will make your liver dance.
So, my call to action for all followers of Iron-ic Wellbeing, whether you have haemochromatosis yourself or know someone who does, is to please share this post and tell five people about haemochromatosis. You just might save a life in doing so!
- 150g red cabbage, shredded
- 1 carrot, grated
- 1 cup kale, torn into small pieces
- 1 cup broccoli, cut into small florets
- 1 fresh beetroot, grated
- 1/2 red capsicum, sliced
- 1 small granny smith apple, cored, quartered and thinly sliced
- 3 radishes, sliced
- 2 sticks celery, sliced
- 1 cup walnuts, toasted
- 1/4 cup pine nuts, toasted
- 2 tbsp each of pumpkin seeds, sunflower seeds and linseeds
- 1/2 cup fresh parsley, chopped finely
- 1 tbsp sesame seeds
- 2 tsp fresh ginger, grated
- 1 tbsp maple syrup
- 1 tbsp tamari (or soy sauce)
- 2 tsp wholegrain mustard
- 1 lemon, juiced
- 4 tbsp olive oil
- 1. Combine all salad ingredients in a large bowl.
- 2. Put all dressing ingredients in a jar and shake to combine.
- 3. Pour dressing over salad ingredients and toss.
- You can also add some avocado to the salad to further increase the amount of healthy fats.