Living with Haemochromatosis: Its Impact on People's Life and How They Cope with This Condition.
Before we begin
This is a 2 part blog series where the first blog is about Haemochromatosis with its origin and pathophysiology and the second part is an interview with Sheryl who is living with Haemochromatosis. Thank you Sheryl for sharing your journey and talking about your experiences! I am grateful and wish you and your family well.
Here is part 1: “Haemochromatosis: More Common Than You Think! Let Us Learn about Its Origin and Pathophysiology”.
Introduction
Haemochromatosis is described as a metabolic disorder and involves the abnormal absorption of iron in the body. The accumulation of iron in excess causes life-threatening symptoms and severe outcomes on the affected organs, especially the liver. Iron is extremely useful in the human body and vital for its survival as it is involved in oxygen transport and cellular respiration where iron acts as an electron donor and acceptor. Haemochromatosis is more common than the general population thinks. The prevalence of Haemochromatosis is 1 in 300 in the United States or 1 in 200 if the person is from a Northern European descendent and 1 in 9 carry the gene!
A photograph of Sheryl and Tom.
About Sheryl
Sheryl and Tom live in Townsville. A beautiful and sunny city situated on the coast in North of Queensland, Australia. Having lived her whole life mostly asymptomatically, it wasn’t until in 1998 that Sheryl has been diagnosed with Haemochromatosis, and upon doing the genetic test, was found to be homozygous C282Y. It took Sheryl 9 years to be correctly diagnosed with Haemochromatosis. Her husband, Tom, was diagnosed with Haemochromatosis with the H63D mutation through their son’s genetic testing, who was confirmed to be compound heterozygous C282Y/H63D. Sheryl is an avid advocate of Haemochromatosis Australia and happily shares her journey and experience she has had.
Living with Haemochromatosis
Let us start with the now. How are you currently feeling today?
Today? Okay. Previous weeks of being, well up to a couple of days ago, I was feeling extremely fatigued. The fatigue has never gone away. It was one of the first symptoms that I encountered, and despite having all the venesections and being de-ironed to less than 50 µg/L of my ferritin level, the fatigue has stayed with me. Ferritin range: for men, it is between 24 to 336 µg/L, and for women, it is 11 to 307 µg/L (Mayo Clinic, Ferritin test).
I feel a lot of heaviness like I am carrying lead around but it is actually iron (laughs), and general body aches. So, yeah, that has always been the worst for me. The fatigue? Yes, before I was diagnosed, my doctor took 9 years to diagnose me. I was so fatigued that I was slurring and staggering. I wanted to crawl under my desk and go to sleep; otherwise, I would be sitting at my computer, falling asleep. But is it a sleepy feeling or being physically tired? More physically tired, yes. It is like a truck has hit you. It is also hard to read because your eyes keep closing and you can't focus anyway or concentrate – which is still ongoing. By seven at night, I have to go lie down or be in a prone position. I don't necessarily always go to sleep, but my body can't stay upright anymore. It is not the case for everyone, some people don't have that symptom, or if they do, it goes away quickly once they start treatment. I think because I had 9 years of severe untreated symptoms, a lot of damage was already done. Being fatigued with joint pain is the most common symptoms with people that have Haemochromatosis (Cleveland Clinic, Hemochromatosis).
Could you tell us about the condition that you have?
I have genetic Haemochromatosis, homozygous C282Y. I am the only one in my family that is confirmed with homozygous C282Y. There are 5 of us, all the rest that were tested were heterozygous C282Y. The only one that was unknown was my father and knowing the symptoms he would fall asleep as soon he sat down. I would say he was homozygous C282Y. That was never confirmed? No. He died of cancer before any confirmation. He died after I was diagnosed and I would say to him, please tell your doctor so he could get tested. He was one of these people to not divulge their doctor anything. A bit of stoicism I would say, so he lived his whole life never wanting to know why he was sleepy? No, the diagnosis of cancer for him, tongue and throat, was incidental as the pain in his teeth was so bad he went to see the dentist. The dentist discovered the cancer. He had parts of his tongue removed, and he was supposed to have radiotherapy, but he only had 2 sessions and refused to go back for more. So he died 12 months later. Suffering, long-suffering days which was ridiculous and unnecessary. He could have been cured. Of course, we are more prone to cancer due to Haemochromatosis. Especially liver cancer? Liver yes, certainly if it is left untreated, but I have had 2 tumours removed and a melanoma not necessarily linked to Haemochromatosis. The 2 tumours could have been linked to having too much iron because excess iron causes an increase in cancer. It is found that Haemochromatosis increases the chance of cancer in the head and neck as it ‘promotes tumour progression via HAMP and elevated intracellular iron levels, leading to increased cellular proliferation and tumour formation’ (Lenarduzzi M et al, 2013).
Can you describe your journey in finding out your condition, how old were you when you were finally diagnosed and you finally had an answer?
Well, first what brought it on was I had a hysterectomy. I was no longer menstruating or losing blood, which must have been keeping me balanced. Within 6 weeks of the surgery, I did not feel right and kept complaining. I was told I was just getting over the operation, and then you are a working mother, what do you expect? They mentioned I had "Chronic Fatigue Syndrome" to which I disagreed. Then I had pain on the left side of the chest for about 12 months. It was constant pain, not a coming and going thing. Plus there was the fatigue of course, not to mention how the brain goes foggy with a bad memory. How I was diagnosed was because one of my hips broke. I stepped sideways, and the hip broke while at the supermarket, and I was in a considerable amount of pain. So off to be X-rayed and the radiologist knew what caused it. It was avascular necrosis, and I was told I had so much iron particles in my blood that it was blocking the finer capillaries that fed the bone. Commonly, patients with Haemochromatosis have problems with their bones, such as arthritis and osteoporosis. Iron deposition, defects in cartilage and in immunologic function is believed to play a factor in arthritis (Axford JS, 2019), but the mechanism of arthropathy/arthritis and its relation to Haemochromatosis is unknown (Åke Carlsson, Hereditary hemochromatosis: a neglected diagnosis in orthopedics, 2009; Axford JS, 2019). Jeney V, 2017, demonstrate that condition associated with chronic iron accumulation is "…frequently associated with a bone phenotype; characterised by low bone mass, osteoporosis/osteopenia, altered microarchitecture and biomechanics, and increased incidence of fractures" (Jeney V, 2017). There is evidence to suggest that "both increased bone resorption and decreased bone formation are involved in the pathological bone-loss in iron overload conditions" (Jeney V, 2017). The excess iron disturbs the balance between bone resorption and bone formation, to which results in bone weakening (Jeney V, 2017). The osteoporosis is associated with hypogonadism, increase in alkaline phosphatase, increase in body weight, and the severity of iron overload (Medscape, 2017).
I was delighted to have the diagnosis, at last, I got something for which there is a treatment. The treatment is the venesection, which removes 450-500 mL of blood, and that makes your body think it is anaemic and kick out the stored iron in my organs back into my blood supply. Theoretically, with all the venesection I have had over 21 years, I probably got less iron in my body than you have (laughs). So that is how the venesections gradually reduces the ferritin level. At first, it was weekly (venesection) for a couple of months and then every 2 then 3 then 4 weeks. I was referred to a haematologist who was very good and I was especially lucky. Some GPs think they can treat it and decide when a patient should have venesections. These may not be personalised and might be according to some schedule that they have read. After a few venesections, the pain in my chest dissipated, in that regard, I was still complaining of being tired. I was to put off having a hip replacement as long as I could because hip replacement don't last very long at that time when they were doing it. I think it was about 4 years later that I felt I had to do something and within 6 weeks of having that hip replacement my other hip died and broke up too. Unfortunately that hip surgery was botched so I was left in pain forever because no other orthopaedic surgeon wanted to touch it and fix it. Though I couldn't have gone without the hip replacement as it was too painful and I was on too many pain-relieving drugs and I didn't want to continue with that.
So back to your question, yes absolutely elated as one is usually after finally getting a diagnosis. We are made to think we are imagining it at times. That we are hypochondriacs or that we are sensitive. It just wasn't so. Eventually, with the venesections, I got the ferritin level to be reduced to 50 µg/L. Ferritin range: for women, 11 to 307 µg/L (Mayo Clinic, Ferritin test). There were some up and downs, and sometimes it would go up. First, my haematologist would increase the frequency to bring it down, but in retrospect, and you only know this when you look back, it would have come down with normal venesections anyway. Sometimes an increase in ferritin can be caused by having a cold or inflammation or infection. My liver was good, and it wasn't affected.
I have seen Haemochromatosis affects a lot of organs such as skin, heart, liver, thyroid, pituitary gland – oh yes, I am glad you have reminded me. I ended up having a microadenoma on my pituitary gland. That was a nightmare for another 6 years as once again, it wasn't diagnosed. It affected my hormones and hence my body. I was in this constant severe state of menopause despite having hormone treatment. I went to another doctor actually, and she said she would like to see what is happening with me. I said yes, so would I! She sent me to an endocrinologist and took a blood test and an MRI. Once again, I was totally elated. The treatment, the drug called Cabergoline, was like a miracle that worked pretty much immediately. This started about 4 years later after being diagnosed with Haemochromatosis. The iron deposits affect the pituitary gland and the hypothalamus as they don't have the blood brain barrier. ‘In these regions, the blood brain barrier (BBB) capillaries are highly fenestrated with less tight junctions between endothelial cells creating a more permeable barrier’ (Haddad-Tóvolli R et al, 2017).
Yeah, so since then I had another tumour removed which I was very lucky to have done because left untreated it would have been deadly. No evidence or proof that it had anything to do with Haemochromatosis. My thyroid was always tested okay, but since then, I have found I had multinodular on one side of the thyroid, and that was removed. Other than that the thyroid was fine, but there were no symptoms for the multinodular thyroid anyway, well in terms of blood tests it was always normal. How did you find it? Did you feel it one day a bit of pain or seeing something odd and have a look? It was swollen, and twice I said to my GP, what do you think this is? To which the GP replied it is just fat, and I said how come I only have it on one side? There was no answer to that. I went off for an ultrasound for another suspicious lump, and I said to the technician while you are looking at that could you look at this one. I had to come back and have biopsies for both of them, and once again I came up against a bit of a brick wall. The radiologist who did them (the biopsies), using the ultrasound to guide him, said ‘do you really want to do this? If we tested every lump on a person, Australia would go broke’ but I said yes I do really want it. His test results from the biopsies were faulty, and luckily I had a thyroid surgeon who said 'no that is not right, you are going back' and had it redone by the head of the radiology. When you said faulty, what does it mean? Did the test come back inconclusive? Well, there was nothing to be found even though there was something. To which you went to see a thyroid surgeon, and she said 'let's do it again'. Yes, that's right.
Were there times where you felt no one was listening to you? And it seems already you have been answering that question throughout the initial time you finally found out, did you ever feel frustrated?
Yes, definitely. So for Haemochromatosis, it was a different doctor, and she was deemed to be one of the best female doctors in town. I would have stayed with her because it was a wake-up call for her. She had been in denial. So I thought, okay she is not going to ignore anything again, but she moved away. She did tell me 'I didn't think you had that because you didn't look like you had it' and I said what am I supposed to look like? She responded 'I thought you would have liver damage', (such as cirrhosis of the liver or grey diabetes makes the skin look grey). Now I did have a really good tan from the Haemochromatosis, but up here in Queensland, everyone has a reasonable tan. I don't sit down in the sun, so I was tanning indirectly which I didn't know it had anything to do with Haemochromatosis until I was able to read up about it. What I am finding is that on occasions the doctors are waiting for end results, rather than reading the first signs and doing preventative medicine, which isn't right. Isn't it awful the number of people that would go undiagnosed because of these attitudes? “It is therefore important that the specialties involved in the initial evaluation of patients presenting with symptoms, which are compatible with hemochromatosis (general practitioners, rheumatologists, endocrinologists, gastroenterologists, hepatologists, cardiologists) are aware of the disease and know how to make the diagnosis on a blood sample and then refer the patient to an appropriate clinic or hospital for further evaluation” (Milman NT et al, 2019).
If you have any advice for future medical practitioners, what information would you give if they ever meet someone with Haemochromatosis?
I think that all doctors should do an iron study test regardless because an iron study is a window to a lot of issues. The doctor might not believe that you have Haemochromatosis, they might think that you are tired or that you are anaemic. Hence, it is quite a surprise that they find out it is the opposite, with high iron load and high ferritin. They may not always have got to the stage of having high ferritin, but the iron study tests is for the serum iron, total iron-binding capacity (TIBC) which I don't know if it is taken into account, transferrin saturation percentage and ferritin. Now if your transferrin saturation percentage is higher than 45 (it used to be 50 for males) that is a marker for Haemochromatosis. Even if their ferritin is not really high, the transferrin saturation percentage is a good indicator. Usually, you are meant to test twice and get a genetic test or if the patient knows it is in the family that's a pretty good reason to have a genetic analysis. I think iron studies should be standard and then you can pick up Haemochromatosis or something else.
My husband is homozygous H63D, that is a bit of a story. I was diagnosed, and my GP said we will test all your whole family - siblings, mother, father and my son. My son was found to be compound heterozygous, which is C282Y/H63D, and obviously the H63D didn't come from me. My husband was tested and found to be homozygous H63D. My GP said 'oh that is so unusual' and I said not necessarily so, it is just that not everyone is being tested, that's just the frequency of it. Mine was the most aggressive. It isn't always the case as some people are asymptomatic but should be monitored in case something changes in their body composition that triggers off the iron loading. My husband has the least aggressive although he had some venesections (his ferritin level was 550 µg/L at the age of 50, range for an adult male: 24 to 336 µg/L) and our son is in between, as he got a part of both of us (an aggressive one and a not as much aggressive one). His level of ferritin was 770 µg/L at age 22, so he was loading iron at a fast rate for someone who was compound heterozygous. Milman NT et al 2019, mentions that between 700-800 µg/L liver fibrosis will begin to develop, and if there is no venesections being done or initiated, the iron accumulation will cause damage. This will lead the liver into a cirrhosis stage which decrease the liver function and increase the chance of liver cancer.
Now Tom doesn't know anyone in his family who has it. There were letters sent to the rest of the family to be tested but never got any responses. Tom is from Scotland, yeah that's right, people with Northern European ancestry has the most Haemochromatosis prevalence, yes well they say the Celts had it first, but it is not really a Celtic disease from what I have researched. The Vikings were also involved (Cassidy LM et al, 2016; Distante S et al, 2004). I have some Danish heritage through my great grandmother whose mother was Swedish, my great grandfather was Scottish, but I think he may have had Viking blood. That's how I believe the genes got into our family, although my mother was heterozygous so obviously she got from her parents who were English.
Figure 1: Demonstrates Sheryl and Tom’s family tree. Half-filled squares or circles represent carriers, whereas filled squares or circles are Haemochromatosis affected people. Everybody will have two copies of the gene HFE where one came from Dad and the other from Mom. Hereditary Haemochromatosis is described as an autosomal recessive condition, which means having a copy of the defective genes should not demonstrate any clinical symptoms as the other regular gene would be dominating. Interestingly, it is possible to receive 2 different defective genes making the person a compound heterozygotes (e.g. C282Y and H63D). This person will demonstrate clinical symptoms. It is also possible to have both of the same defective genes (e.g. C282Y and C282Y), inherited from their parents who most likely were carriers and never knew their whole life. Note that in generation one (I) the people numbered 1, 2, 3, 4, 7 and 8 could be carriers or non-carriers. It would have been fascinating to see where the Haemochromatosis HFE genes came from.
Of course, once the diagnosis, I got all the right treatment and had a fantastic team looking after you? Yes, especially going through haematologists. Stories I heard from other people with Haemochromatosis who's had their doctors treat them and decide when to get their venesections haven't always been excellent. I always tell people when they get diagnosed, they must see a haematologist. This probably puts a load on the general hospital, or if they have private insurance, they can see a private haematologist. I have had mixed of treatment; first, we were referred to a haematologist to the hospital as public patients. We have had a couple of years of venesections, but then the haematologist got overloaded with all the people being diagnosed with Haemochromatosis as I did a bit of work by spreading awareness. Since we had private health we got asked to go to a private clinic, so we still had the same haematologist. To have our venesections being part of the hospitals, we had to pay 500 dollars per year for excess fees which is ridiculous. Hence, I was quite happy to stay with public hospitals.
I used to donate for years before I was diagnosed. When I was diagnosed, I went back to the blood bank, and they told me that they couldn't take the blood anymore. They had this idea that Haemochromatosis was a disease and that the iron in my blood would cause harm. Eventually, they were educated to a point where they would make therapeutic donations only with a referral from a doctor. They have been using the blood of a lot of people who donate and don't know if they have Haemochromatosis. It also got to a point where it started to become difficult to get blood out of my veins, and they will only try twice to withdraw, whereas in the Oncology department at the hospital they will keep trying. In the end, there was no point for me to stick to the blood bank, which is a shame because then they could have used my blood as there is a shortage of blood. At the hospital, they were experimenting with stem cell therapy, and I was asked if they could use my blood for stem cell growth. So it did go to some good use.
I was wondering, do you sometimes feel isolated by other people who don't understand your condition?
I didn't feel isolated, maybe unsupported, yeah unsupported. A lot thought I was lazy because I can't do as much as I could, such as keeping my house clean as much as I could. Whereas before the onset of iron loading, I was like Super Woman. Going to the gym 3 times a week, working full time, had a son which I carted around to all his various activities, mowing the lawn, et cetera. I could cope with all these activities. But after that, I couldn't do any of these once the iron started loading. Now I have to say 'sorry I can't do that' and I only have short days and I am just not up to it. I feel they don't understand what it is like to be like that. If I told them about Haemochromatosis, it is already gone out of their mind never to be reminded again (laughs). This condition changes the way of how you live your life, so everything is slowing down, and your days are shorter? Yes, I have less active hours in my day.
Leading onto that, did that cause more stress on your mental health, knowing that you can't do the things you use to.
Yes, it does, it is rather depressing although I wouldn't say I have a depressed personality. Sometimes I wish I could get this done or that done, in reality, I felt quite lucky that I have been diagnosed and was able to be treated so easily. I didn't have to go on chemotherapy as having venesections is so much better than having chemotherapy. When I was having my venesection, I would be in the same room with people having chemotherapy, and they looked a lot worse than me where I would appear to be full of life, bouncing and tanned.
Even being de-ironed, the fatigue was still with me. I was still struggling at work. As I said, I just wanted to crawl under the desk and go to sleep. Really I kept thinking I have to stop working but I can't. I love my job and wanted to keep working, but Tom needed to be looked after as he got Hodgkin's Lymphoma and I had to give up. I had to look after Tom and myself. I did get quite weak from muscle weakness from the hip replacements, it's part of the Haemochromatosis anyway. I wanted to go to France, and I knew I needed some strength to walk up the stairs, and all the walking around you do over there. I was referred to an exercise physiologist, where I went to the gym 2-3 times a week, which I stuck out until I went to France. Is it possible to have Haemochromatosis and at the same time going to the gym and do light exercise? It is definitely possible, but when you have short days and not enough hours for the commitments and responsibilities, it is tough to fit it in (really, I never fitted it in - I just did not do other things). France was a big motivator? Oh yes, we had another 2 abroad trips since then, but it was a challenge. We went cruising through the canals in France with a boat. There is a lot of stepping out of a boat, just moving about to keep balance, and pulling ropes, that sort of things. Then you get to the next town and village with a lot of walking, sometimes short and long, but lots of café along the way! Was it doable? Yes, it was, but it was so uplifting for me to be there and doing that, it was fabulous. It helped psychologically to travel and set as a goal.
Oh, that's good, so would you advise people who have Haemochromatosis something that would motivate them and bring them happiness? Yes, I would. To do something I always dreamed of doing but not everyone is in that position. I mean some people continue to work because they can physically and mentally. If they couldn't, they would have to stop. When Tom got Hodgkin's, we were living on redundancy pay for 2 years before I could get enough energy together to apply for a disability pension for my husband. We had to go to Centrelink, which is a pretty hard thing to do to go through the processes when you are not feeling well. It is so difficult to get a disability pension. I thought I would write a letter to describe what the problems are because the forms you complete don't ask enough, so I think that really helped. After a couple of years, I thought I was never going to go back to work myself, so I applied for a disability pension and once again wrote a letter. Luckily I was interviewed by a woman who had a cousin with Haemochromatosis, so she was aware of all those problems. To a certain point, I guess, this helped ease the way until we were old enough to be transferred on a regular pension. Otherwise, financially, it has been challenging. A lot of medical costs even though we were going through the public health systems. We still went to and fro to the doctor and buying medication to make you feel better. You buy multivitamins and minerals to try and help. It's no guarantee, but you have to be proactive to try and help yourself.
Did you have changed your nutrition, did you avoid foods that had a lot of iron?
No, because you not supposed to anyway. We shouldn't eat foods that are fortified with iron such as added iron in bread or avoid package foods that have +iron written on it. Milk I believe at one stage had fortified iron. I do check the labels, but as far as natural foods go, there are no problems. Doctors would tell their patients to stop eating red meat or spinach, which is untrue as their haemoglobin will go low and they cannot give their venesections. The blood bank tests the haemoglobin first and if it is not high enough, they cannot allow you to donate. If you are venesected while the haemoglobin is low, you feel terrible and tired. Some people get nauseous and sick. It is impossible to get food without any iron, you just have to make sure you eat your greens because they all got vitamins and anticancer properties in them. What I have been avoiding is starchy carbs such as pasta and rice as it causes fatty liver, there is no point of going to the gym 3 times a week otherwise. So, no, I certainly didn't change my diet as I was already on a healthy diet.
If someone has newly been diagnosed with Haemochromatosis, what is your advice to them for their journey when they started, what's your biggest go-to?
Get a referral to the haematologist, educate yourself, contact your Haemochromatosis association and get all the information from them, and read medical research. It's important to really educate yourself to the point you know more about it than your doctor does so you can be proactive and find out when you should have your venesections. What about support groups to understand your condition better? Yes, support groups are useful in that you can talk to other like-minded people and of course, get information from them, you can compare notes, experience, advice/tips, or 'this is what happened to me when I did this'. I ran a support group for 18 months. It was once a month meeting with a lot of preparation. I always prepared with new information for people, they would ask me questions and answer what I could from medical research and explained to them about genetics. It was a get together for them and to talk to people with the same problem. In the end, I got too tired from doing it, and I got to the point where I was sick of saying Haemochromatosis, to be honest. I would have various displays around town where people could ask questions and pick up brochures from me. I had a display table at the senior's exposition, and there must have been 200 people lined up to talk to me individually and getting information. I had displays at libraries, RSL and a chemist. The chemist was so kind as they allocated an intern to me and taught her so she could pass down the information.
The medications that you are taking are more for the side effects and other organs that are being affected.
Yes, it is more for the results of having Haemochromatosis. Such as for my hip, I needed to take pain killers for a long time, but I rather live with the pain than keeping using these pills. My hip still hurts. Walking causes pain as one hip is higher than the other. When I step down, it's like one leg is longer than the other, I trip on things, and I couldn't walk upstairs. I am still not great at getting up there, but at least I can get there eventually. I had medication for neuropathy too. Of course, there is hormone therapy, I still take Cabergoline because that is still not going away and vitamins/minerals, especially calcium/Vitamin E. For dessert, I would have cheese or yoghurt, and I take calcium tablets. Omega 3 is for joint pain and a lot of people say turmeric reduce the intake of iron, but I am not convinced. Now I found out the cause of continued fatigue, and body pain could be by having still high transferrin saturation percentage. Mine is often up near 100% even though I was de-ironed. I have spoken to researchers at Haemochromatosis conferences (as we been to three) in Australia (which include Australians, one from Canada, and one from Ireland and a French researcher from Rennes, France). They do a lot of good work in France as they do fabulous work and research on other organs as well as the liver. They had discovered that high transferrin saturation percentage is a cause of toxicity. I continued to have my usual venesections even though my ferritin levels were down in the 20 µg/L range, and then I started noticing my transferrin saturation percentage going down. It is quite low, but I have not felt any changes in regards to improvement or worsening. There is another fellow from the last workshop in Melbourne who talked about his ferritin level. His level was quite low, but his TS% was quite high, and he still felt so bad. For me, you have to keep up frequency, and it's all trial and error.
Is there anything else you want to say or advice?
One of the better things to do is to reduce alcohol consumption, particularly for the liver. A moderate to high alcohol consumption can increase the ferritin level as it affects the liver. You have to decrease the alcohol content. I love my wine, but we just have to be careful. My liver enzymes were always in the right range. In the last few years, we have been having one red wine at night, 100 mL and I know where it comes to in my glass so I don't go over it (laughs). More recently, because we are retired, we have been having a rosé or a white at lunch. It is so luxurious to be able to do that, but I think it doesn't help my fatigue, and it does make me feel tired. It is a worsening fatigue in the short term, but even eating makes me feel very tired, well the digestion part not the actual food consumption. I don't know if everyone has that. I still have my red meat, but someone else was missing his liver/bacon meals. He said 'he really missed eating liver and bacon dinners', so I said that one between venesections shouldn't harm you, even though the liver has 3 times the amount of iron in a steak. All in moderation.
I didn't touch on the frequencies of venesections. To turn up and having venesections can be wearing, especially when it doesn't go smoothly. Sometimes the phlebotomist try 3-4 times and may take up a couple of hours. A lot of people have negative thoughts about their venesections. In a way, I do too because it is tiring, but also I am highly motivated to get that stuff out of me and it is better than having chemotherapy.
In conclusion
A photograph of me and Sheryl after we had our interview about Haemochromatosis.
I would like to thank Sheryl for talking about her experiences about living with Haemochromatosis. Haemochromatosis is a common condition where many people are unaware that there are carriers.
When people do have the condition, it presents at a later stage of their life where the damage of iron loading has already been done. Spreading awareness to doctors, specialists and the general population is ideal as prevention is the best outcomes for people living with Haemochromatosis.
If you are looking for support, resources, events, latest news visit Haemochromatosis Australia website. It is really useful with up to date information!
Published 15th April 2020. Last reviewed 1st December 2021.
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ADDITIONAL SOURCE OF INFORMATION:
Annex 4 - Amino acids, one and three-letter codes.
Fact Sheet 47 | HEREDITARY HAEMOCHROMATOSIS.
Haemochromatosis, 3rd Edition, Digestive Health Foundation 2007.
Institute of Medicine (US) Panel on Micronutrients. Dietary Reference Intakes for Vitamin A, Vitamin K, Arsenic, Boron, Chromium, Copper, Iodine, Iron, Manganese, Molybdenum, Nickel, Silicon, Vanadium, and Zinc. Washington (DC): National Academies Press (US); 2001. https://www.ncbi.nlm.nih.gov/books/NBK222309/.
