My cousin died a couple years ago from it and another cousin was born around the time he died and the poor baby was born with it. I'm having some issues with my liver and my blood work is showing some possibly of hemochromatosis I'm going to be having a liver ultrasound in a couple weeks. My cousin said treatments were very painful so he quit taking them and died. I'm thinking his size might have been why they hurt so bad I think he weighed less then 90 pounds and he was like 5ft 4 so I don't know. He had like cirrhosis of the liver brought on by hemochromeitosis and cirrhosis of the liver brought on by alcohol so it was like double whammy on the cirrhosis
I m sorry for your losses , venesection is the way and I know , even i have problem with needles but anything to live a little more time is good, isn't it? Hope you stay fine @becky
I had always heard that my paternal grandfather had died of "pancreatic cancer". As I proceeded to compile my family tree, a copy of his death certificate appeared. He had died of hemochromatosis. We have Scandinavian and northern European ancestry, so I had an iron test done right away. Nothing unusual about how I process it. Am glad to have learned about this potential condition!
I’m being tested for this medical condition as we speak as I have low ferritin and high iron with a lot of symptoms. I have a severe irrational fear of needles, to the point I pass out. I’ve become worried that if my only choice is to have regular needles put in me, I don’t think I can do it.
It seems odd that you would have low ferritin and high iron. What do you mean by high iron? Low ferritin would generally indicate you do not have excess stored iron so it seems unlikely you would need to have blood taken anyway. You need to check with your doctor but I don't think you need to worry about needles, except for occasional blood tests, for a while anyway.
You should consult your doctor about that. Limits vary for different ethic group and men and women but that sounds a bit low. I assume result of 10 is grams per decilitre. In Australia haemoglobin is usually quoted as grams per litre so that would be 100g/L.
They give iron-rich blood to haemophiliacs. It's why they get you to donate blood. Look up an Ancient Greek named Eristratus. You'll be horrified by how ''scientific'' blood letting is.
If you have Haemochromatosis confirmed with a gene test and your doctor refers you to the Red Cross using the online 'High Ferritin app' the GP can nominate how often you require venesections. This can be more often than the standard 12 weeks limit for normal donors. Your GP will set a review date and may adjust the frequency from time to time as the treatment progresses.
@@JohnSmith-sj2dk My doctor wanted to give me a venasection every two days for 16 days - to replace 100% of my iron-rich blood. Then a venasection every 6 months. I thought it was the stupidest thing I'd ever heard and it remains so.
Check out Info Sheet 2 Diet and Haemochromatosis on our website www.ha.org.au Direct link cdn.haemochromatosis.org.au/wp-content/uploads/2021/12/Diet-and-haemochromatosis.pdf
Allow me to quote an old encyclopaedia. ''Plethora, or an excess of blood, was believed by Eristratus (an early teacher in the Alexandrine School of Medicine) to cause many diseases. He actually diminished blood by dietary methods, but his colleagues used blood-letting (phlebotomy) widely and so began a practice lasting for many centuries.'' Bleeding a river of blood does not repair a defective gene, full stop. Nor does it have any effect on Hepcadin, the protein the gene tells to regulate how much iron is released into your blood stream. No doctor I have ever spoken to knows what that is. Even as they drain blood from you the process by which blood iron winds up as organ iron is not at all interfered with. They only take one pint out of the eight+ in your body - they leave behind 7 pints of the same overloaded blood and the process just continues with 7 pints of blood instead of 8. They say the new blood is ''normal'' and this is thought to save you from something, but it pumps into your veins drop by drop over two days, and goes straight back into 7 pints of toxic blood. They have diluted your gross oversupply of iron by one eighth - except that your gut is absorbing iron from your food and pumping it into your blood because the Hepcadin is not functioning the whole time. Six months of it later they take another pint and tell you it's now ''manageable'' when in fact bleeding has cured/treated you for absolutely nothing. I cannot get any idiot Australian doctor to treat any symptom arising from being poisoned by a gross oversupply of what the whole world's medical practices regard as a ''heavy metal'' even if it actually isn't in the lead/uranium class. I developed an aortic aneurysm - most HH victims will go out with heart failure of one kind or another, a quarter die from liver or pituitary failure. My sister died from an aortic aneurysm. She had HH too and only got to 52. So did my friend, Bonny Elliot, 12 years later. It was missed by the quacks at Wagga Base Hospital and I was called a ''lying hypochondriac'' and ''an idiot with a stomach ache.'' They found it within seconds of looking at Calvary Hospital the next day. Because I'm a public patient nobody will fix it BEFORE it bursts and I'm currently putting together a medical holiday to Thailand to get it fixed. No doctor can tell you what the two hallmark symptoms of HH are - Chronic fatigue and aching joints, and I have never managed to obtain treatment for either in 13 years of trying. Other symptoms might/probably will include tactile/sensory changes (human skin feels like snake skin to me and had a lot to do with the death of my marriage, and my wife). You may have random patches of pain appear anywhere on your body for no obvious reason. First time I got that one it felt like I'd been hit in the ribs with a baseball bat in the middle of the night. A 6 inch circle of serious pain I could draw an accurate tracing of where it was. Three weeks later it moved to my right hip joint, stayed a week and left. I get them routinely 18 months later. You may get needle-stick sensations which I get mostly in my legs, but have had elsewhere including my eyes. That's always interesting, especially while driving. You may live long enough to experience foggy thinking, your brain reacting to the rusting garbage in your head. You WILL experience chronic fatigue, something I started noticing as a 35 year old. I was 49 before I found out why, but have never received any help for it. You will probably be kept awake by any old injuries. I have a fractured spine and can feel every bit of damage on a 24/7 basis. I also now have a curvature I never had. No help there either. HH may produce restless leg syndrome, something that kicked in for me 15 years ago. I have spent hundreds of sleepless nights with wet towels draped over my lower legs with a fan on them to cool them down enough for me to get to sleep. Never any help there either. My sleep patterns are so bad I can reasonably truthfully claim to have seen pretty much every single sunrise this century so far. Your sex life will probably go down the toilet. In fact all the fun things you used to do after work or on the weekends are going to become a tedious chore, and you'll find you'll stop doing them one by one until your house is your world. And that's if you live long enough. The sound of your voice is probably going to change. I sound nothing like I did 5 years ago. You may undergo sudden, rapid weight loss for no obvious reason. I lost 21 kilos in a 12 month period without changing anything I did. I look like I just walked out of Auschwitz. Australian doctors, without exception that I can vouch for, believe HH victims suffer no organ damage at any stage and if one simply donates blood to a blood bank there are no symptoms, no ill effect, and that you will die at 95 in a nursing home with all the other people who don't have a gene defect. This is utter nonsense. One Canadian source, a university lecturer, has this to say: ''There is no such thing as a 70 year old with Hereditary Haemochromotosis, and there's almost no such thing as a 60 year old. We think the average age of death of most HH victims is about 55 - but most HH deaths will be put down to other causes like heart failure or liver cancer so the figures aren't exactly reliable.'' My sister died at 52 in 2005, my ex-school mate Bonny Elliot died in 2012, also aged 52. Both had heart failure, my sister also had a brain aneurysm which is what actually killed her. I have an aortic aneurysm I may have to get repaired in Thailand because I cannot seem to get it fixed here. The oldest living person I've ever found on the internet who has/had HH was a 62 year old American woman, now gone. I'm 62 and I wouldn't wish how I feel on a daily basis on anyone I like. I started asking for help 18 months ago and have yet to receive more than a box of blood pressure pills. The health services and support for HH victims is so bad in Wagga Wagga I sold my home and am moving interstate - to access some help, which I just can't get here in this backward town - or indeed in this whole backward country. If I was an American I'd be on a script for Defoximine, and I'd be getting IV Iron Chelation Therapy - something you can so yourself by using capsules and swallowing them rather than sticking a needle full of it up your own arm. Ask an Australian doctor about either of them and you'll get a blank look and nothing more. Seriously, talking to an Australian doctor about HH is like talking about your last trip to the beach. You get the same treatment. ''Go donate blood to a blood bank (and make yourself useful before you die).'' At no stage does bleeding reduce your blood iron levels to ''normal.''
![Shoreline Mafia - HEAT STICK (OHGEESY & FENIX FLEXIN) [Official Music Video]](http://i.ytimg.com/vi/xKEY6THtwuA/mqdefault.jpg)
I have just been diagnosed. These videos are excellent and have been a real help for me. Thank you.
They are garbage.
Hi. What symptoms did you have?
This is a great video thank you. I was diagnosed 3 weeks ago. Today I start dumping blood.
Thank you this is good information from a patients standpoint
I m a new medical student, i read about it then I was doubtful, lol
So I am here, and you guys will help me remembering this disease
My cousin died a couple years ago from it and another cousin was born around the time he died and the poor baby was born with it. I'm having some issues with my liver and my blood work is showing some possibly of hemochromatosis I'm going to be having a liver ultrasound in a couple weeks. My cousin said treatments were very painful so he quit taking them and died. I'm thinking his size might have been why they hurt so bad I think he weighed less then 90 pounds and he was like 5ft 4 so I don't know. He had like cirrhosis of the liver brought on by hemochromeitosis and cirrhosis of the liver brought on by alcohol so it was like double whammy on the cirrhosis
I m sorry for your losses , venesection is the way and I know , even i have problem with needles but anything to live a little more time is good, isn't it?
Hope you stay fine @becky
@@RitoB thank you and your very right anything to stay alive. Best wishes to you also😊
I had always heard that my paternal grandfather had died of "pancreatic cancer". As I proceeded to compile my family tree, a copy of his death certificate appeared. He had died of hemochromatosis. We have Scandinavian and northern European ancestry, so I had an iron test done right away. Nothing unusual about how I process it. Am glad to have learned about this potential condition!
Excellent. Good luck to You All 🍀🌞🍀
I have weekly venesections as I have polycythemia vera.
What form of blood donation removes the most Iron.Whole blood? plasma? Power red? Ect?
In the States at least, people with HC cannot donate blood, so I've read. Does anyone know of anything different?
No my daughter in law has HC and she can donate blood.
In Missouri State
I’m being tested for this medical condition as we speak as I have low ferritin and high iron with a lot of symptoms. I have a severe irrational fear of needles, to the point I pass out. I’ve become worried that if my only choice is to have regular needles put in me, I don’t think I can do it.
It seems odd that you would have low ferritin and high iron. What do you mean by high iron? Low ferritin would generally indicate you do not have excess stored iron so it seems unlikely you would need to have blood taken anyway. You need to check with your doctor but I don't think you need to worry about needles, except for occasional blood tests, for a while anyway.
@@mtonykaye sorry I may have been confused, he mentioned high iron and low ferritin, but he could of meant high iron saturation.
Hello, I have haemochromatosis. is it possible to know the type of cancer James has? Is it hepatic cancer? Thanks.
Yes that's right. James has spoken publicly about that.
My weight is just 41kg should
Blood donation still be done by me?
Only one way to find out
If ferritin is at 2,000 and hemoglobin is at 10 , Can you donate blood? I’m confused
You should consult your doctor about that. Limits vary for different ethic group and men and women but that sounds a bit low. I assume result of 10 is grams per decilitre. In Australia haemoglobin is usually quoted as grams per litre so that would be 100g/L.
@@HaemochromatosisAust thanks we are in the process of a doctor consultation now
They give iron-rich blood to haemophiliacs. It's why they get you to donate blood. Look up an Ancient Greek named Eristratus. You'll be horrified by how ''scientific'' blood letting is.
in Australia can you donate more than once every 3 months?
If you have Haemochromatosis confirmed with a gene test and your doctor refers you to the Red Cross using the online 'High Ferritin app' the GP can nominate how often you require venesections. This can be more often than the standard 12 weeks limit for normal donors. Your GP will set a review date and may adjust the frequency from time to time as the treatment progresses.
@@HaemochromatosisAust Thank You !
@@JohnSmith-sj2dk My doctor wanted to give me a venasection every two days for 16 days - to replace 100% of my iron-rich blood. Then a venasection every 6 months. I thought it was the stupidest thing I'd ever heard and it remains so.
@@The_Resistance_1961 you will end up like George Washington!
@@JohnSmith-sj2dk How - dead or becoming the US President.
What do you eat
Check out Info Sheet 2 Diet and Haemochromatosis on our website www.ha.org.au Direct link cdn.haemochromatosis.org.au/wp-content/uploads/2021/12/Diet-and-haemochromatosis.pdf
Food with no iron in it, and 8 OO capsules of EDTA every day.
@@The_Resistance_1961 what is EDTA?
I did read on it 😌thanks for the info
Allow me to quote an old encyclopaedia. ''Plethora, or an excess of blood, was believed by Eristratus (an early teacher in the Alexandrine School of Medicine) to cause many diseases. He actually diminished blood by dietary methods, but his colleagues used blood-letting (phlebotomy) widely and so began a practice lasting for many centuries.''
Bleeding a river of blood does not repair a defective gene, full stop. Nor does it have any effect on Hepcadin, the protein the gene tells to regulate how much iron is released into your blood stream. No doctor I have ever spoken to knows what that is. Even as they drain blood from you the process by which blood iron winds up as organ iron is not at all interfered with. They only take one pint out of the eight+ in your body - they leave behind 7 pints of the same overloaded blood and the process just continues with 7 pints of blood instead of 8. They say the new blood is ''normal'' and this is thought to save you from something, but it pumps into your veins drop by drop over two days, and goes straight back into 7 pints of toxic blood. They have diluted your gross oversupply of iron by one eighth - except that your gut is absorbing iron from your food and pumping it into your blood because the Hepcadin is not functioning the whole time. Six months of it later they take another pint and tell you it's now ''manageable'' when in fact bleeding has cured/treated you for absolutely nothing.
I cannot get any idiot Australian doctor to treat any symptom arising from being poisoned by a gross oversupply of what the whole world's medical practices regard as a ''heavy metal'' even if it actually isn't in the lead/uranium class. I developed an aortic aneurysm - most HH victims will go out with heart failure of one kind or another, a quarter die from liver or pituitary failure. My sister died from an aortic aneurysm. She had HH too and only got to 52. So did my friend, Bonny Elliot, 12 years later. It was missed by the quacks at Wagga Base Hospital and I was called a ''lying hypochondriac'' and ''an idiot with a stomach ache.'' They found it within seconds of looking at Calvary Hospital the next day. Because I'm a public patient nobody will fix it BEFORE it bursts and I'm currently putting together a medical holiday to Thailand to get it fixed.
No doctor can tell you what the two hallmark symptoms of HH are - Chronic fatigue and aching joints, and I have never managed to obtain treatment for either in 13 years of trying. Other symptoms might/probably will include tactile/sensory changes (human skin feels like snake skin to me and had a lot to do with the death of my marriage, and my wife). You may have random patches of pain appear anywhere on your body for no obvious reason. First time I got that one it felt like I'd been hit in the ribs with a baseball bat in the middle of the night. A 6 inch circle of serious pain I could draw an accurate tracing of where it was. Three weeks later it moved to my right hip joint, stayed a week and left. I get them routinely 18 months later.
You may get needle-stick sensations which I get mostly in my legs, but have had elsewhere including my eyes. That's always interesting, especially while driving. You may live long enough to experience foggy thinking, your brain reacting to the rusting garbage in your head. You WILL experience chronic fatigue, something I started noticing as a 35 year old. I was 49 before I found out why, but have never received any help for it. You will probably be kept awake by any old injuries. I have a fractured spine and can feel every bit of damage on a 24/7 basis. I also now have a curvature I never had. No help there either.
HH may produce restless leg syndrome, something that kicked in for me 15 years ago. I have spent hundreds of sleepless nights with wet towels draped over my lower legs with a fan on them to cool them down enough for me to get to sleep. Never any help there either. My sleep patterns are so bad I can reasonably truthfully claim to have seen pretty much every single sunrise this century so far.
Your sex life will probably go down the toilet. In fact all the fun things you used to do after work or on the weekends are going to become a tedious chore, and you'll find you'll stop doing them one by one until your house is your world. And that's if you live long enough. The sound of your voice is probably going to change. I sound nothing like I did 5 years ago. You may undergo sudden, rapid weight loss for no obvious reason. I lost 21 kilos in a 12 month period without changing anything I did. I look like I just walked out of Auschwitz.
Australian doctors, without exception that I can vouch for, believe HH victims suffer no organ damage at any stage and if one simply donates blood to a blood bank there are no symptoms, no ill effect, and that you will die at 95 in a nursing home with all the other people who don't have a gene defect. This is utter nonsense. One Canadian source, a university lecturer, has this to say: ''There is no such thing as a 70 year old with Hereditary Haemochromotosis, and there's almost no such thing as a 60 year old. We think the average age of death of most HH victims is about 55 - but most HH deaths will be put down to other causes like heart failure or liver cancer so the figures aren't exactly reliable.'' My sister died at 52 in 2005, my ex-school mate Bonny Elliot died in 2012, also aged 52. Both had heart failure, my sister also had a brain aneurysm which is what actually killed her. I have an aortic aneurysm I may have to get repaired in Thailand because I cannot seem to get it fixed here.
The oldest living person I've ever found on the internet who has/had HH was a 62 year old American woman, now gone. I'm 62 and I wouldn't wish how I feel on a daily basis on anyone I like. I started asking for help 18 months ago and have yet to receive more than a box of blood pressure pills. The health services and support for HH victims is so bad in Wagga Wagga I sold my home and am moving interstate - to access some help, which I just can't get here in this backward town - or indeed in this whole backward country.
If I was an American I'd be on a script for Defoximine, and I'd be getting IV Iron Chelation Therapy - something you can so yourself by using capsules and swallowing them rather than sticking a needle full of it up your own arm. Ask an Australian doctor about either of them and you'll get a blank look and nothing more.
Seriously, talking to an Australian doctor about HH is like talking about your last trip to the beach. You get the same treatment. ''Go donate blood to a blood bank (and make yourself useful before you die).'' At no stage does bleeding reduce your blood iron levels to ''normal.''