This week was Haemochromatosis Awareness Week in Australia – a time to raise awareness of haemochromatosis for those yet to be diagnosed and to focus attention on ongoing research for those of us who are living with this disease. And what a successful week it was!
Despite haemochromatosis affecting almost one in every 200 people, it is still a disease which is often diagnosed too late for many people. It genuinely pains me to think there are so many people struggling with unexplained symptoms whilst the disease is overlooked. In addition to the detrimental physical impacts of late diagnosis, I was reminded this week by a new follower and fellow heamochromatotic (yes, I learnt a new word this week too!) that the emotional toll of not knowing was equally traumatic, debilitating and isolating as the physical conditions. Conversely, a diagnosis can be such a liberating experience, as dealing with the fact that you have haemochromatosis is a whole lot easier when you know why you have been feeling so lousy for so long, that you were not imagining or exaggerating your symptoms, that you are not alone, the condition is easily manageable and a normal life is entirely possible.
I’m passionate about raising awareness of haemochromatosis, and in doing so reducing the physical and psychological burden of this condition, which is why Iron-ic Wellbeing joined with Haemochromatosis Australia and Eastern Health (thanks to our inspiring speaker, Associate Professor Amanda Nicoll, Director of Gastroenterology) to host a free public information session as part of Haemochromatosis Awareness Week.
Oh, the power of collaborations! Not only was the evening a success in bringing together complete strangers united by a common cause (sincere thanks to each and every one of you for sharing your personal experiences), but it also shed light on new research and demystified a number of myths which have perpetuated for a very long time in respect to managing haemochromatosis.
Here are the top ten new facts I learnt about haemochromatosis during Haemochromatosis Awareness Week:
- First and foremost, haemochromatosis should not be regarded an “abnormality” but rather a “variation on normal” given it is just as common as being left handed or having green eyes (I just love this one!). Further, people with haemochromatosis should regard themselves as “superhuman” as haemochromatosis developed as a survival mechanism historically (survival of the fittest). We are not mutants!
- Whilst a liver biopsy test is still the “gold standard” for determining inflammatory activity, there are new non-invasive tests emerging which can assess the impact of haemochromatosis on the liver. A FerriScan is a MRI based method for testing iron concentrations in the liver. You can find out more information about FerriScan here. A Fibroscan is a newer technique which uses ultrasound to test the degree of “stiffness” in the liver as a means of assessing scarring or fibrosis of the liver. Ask your GP for more information about this test.
- You don’t need to adhere to a low iron diet when diagnosed with haemochromatosis and do not need to give up red meat or high iron vegetables. This is great news for those of you who are meat eaters and do not want to miss out on my Slow Baked Greek Lamb with Parmesan Potatoes (see recipe below).
- Multi-vitamins containing iron and iron fortified foods can be consumed by people with haemochromatosis given the very low amount of iron in these products.
- You can consume alcohol in moderation if you have haemochromatosis (subject to your GP’s orders) if your iron levels are being maintained at a safe level and you have a normal and healthy liver.
- It is not necessary to test children for haemochromatosis before their late teens (and it is not harmful to delay the testing until this point) given the very slow build up of iron in the body. You may wish to “get in early” however where there could be a general predisposition to saying “no” to testing during the teenage years!
- It is not uncommon for people to recover from a venesection to varying degrees, with this primarily due to an individual’s sympathetic nervous system (flight or fight response). Further, approximately 5% of people faint when giving blood (so you are not alone!), often as a result of dehydration. If this happens you should lie down and when feeling better eat something salty. It sounds nonsensical that salt can actually help overcome dehydration, however it will actually draw out the water from the stomach and help it circulate through your body. Did you ever wonder why your local Blood Service offered seemingly unhealthy food options like chips, nuts and pretzels? Now you know why! How many times do you actually have permission to eat a packet of chips?
- There is actually little scientific evidence of high iron in the blood causing joint pain, however the HFE protein or calcium deposits (crystals) may impact the lining of the joint, resulting in knuckle and ankle pain in particular. Further research is needed in this area.
- Infection can increase ferritin levels as our body seeks to mobilise more iron to fight off the harmful invader. It is best to avoid undergoing a blood test whilst unwell, or to be mindful of the correlation so as not to misinterpret the results.
- Under the Australian Financial Services Council’s Genetic Testing Policy, you do not need to undergo a genetic test when applying for life insurance, however you may need to produce test results if previously undertaken. We are finally being treated just like everyone else! The Financial Services Council has released a consumer fact sheet on genetic testing for haemochromatosis which can be viewed here.
Have you come across any new facts about haemochromatosis lately? Why not share them here so we can all benefit from new research and debunked urban myths.
- 2kg leg of lamb
- 4 cloves of garlic, quartered
- 1 tbsp dried oregano
- 1.5 cups chicken stock
- 1/3 cup lemon juice (optional)
- Salt and pepper
- 5 Desiree potatoes
- 1 cup chicken stock
- 2 tbsp lemon juice (optional)
- 50g butter, melted
- 1 tsp dried oregano
- 2 cloves garlic, minced
- 1/2 cup grated parmesan
- chopped fresh parsley
- salt and pepper
- 1. Preheat over to slow (150 degrees Celsius).
- 2. Meanwhile, use a sharp knife to cut 16 incisions in the lamb and press the garlic into the cuts. Rub lamb with oregano, salt and pepper.
- 3. Place the lamb in a large baking dish (with a lid) and pour over chicken stock and lemon juice.
- 4. Cover tightly and bake the lamb for 3.5 hours, basting with pan juices occasionally.
- 5. Turn up the oven temperature to 180 degrees Celsius and remove the lid from the baking dish. Cook for a further 30 minutes, or until the lamb is browned.
- 6. Remove lamb from pan and place on a warm serving platter. Cover with foil and let rest for 45 min to 1 hour (it will stay warm under the foil).
- 1. Butter a shallow baking dish.
- 2. Peel and cut the potatoes into quarters and place in the prepared dish.
- 3. Combine stock, butter, lemon juice, oregano, garlic and salt and pepper and pour over the potatoes.
- 4. Cover the potatoes with foil and bake for 40 mins at 180 degrees Celsius.
- 5. Remove the foil and sprinkle over the parmesan. Return to the oven and cook for a further 20 minutes, or until the potatoes are golden.
- 6. Sprinkle with parsley and serve.
- Serve with roast carrots, baby beets and steamed green beans.