An Irish View of the Celtic Curse: Hereditary Hemochromatosis
Over at the very informative website of the Iron Disorders Institute there was a link to a story about hemochromatosis in an Irish newspaper. Since hemochromatosis is known as the Celtic Curse--on account of its relatively high rate of occurrence in persons of Celtic ancestry--I thought this article would be an interesting perspective on my wife's condition. I also realized it could be a story that you would have missed if you just searched the web for hemochromatosis. That's because the article spells hemochromatosis as haemochromatosis, which is sometimes the case outside of America.
How Irish is the Celtic Curse? Across Europe as a whole the chance of someone experiencing iron overload is one in 400; in Ireland, it's almost five times higher at one in 83. And one in five people in Ireland carry the gene that can lead to this condition. Of course, the problem is not confined to the Emerald Isle. With so many people having emigrated from Ireland to North America over the centuries it shows up pretty widely here as well.
The article is a good introduction to the condition with enough detail to give you a clear picture of the implications without getting too technical. It's also an interesting non-American perspective. What it does not explore in much depth is the distinction between treatment of iron overload and treatment of organs damaged by iron overload.
In other words, it is relatively easy to reduce iron levels through blood donation, not so easy to cure the damage to liver, pancreas, heart, joints, and various parts of the endocrine system. Indeed, some of that damage, due to failure to diagnose hemochromatosis at an early stage, can be permanent and leave a person–as in my wife’s case–with a pretty miserable quality of life. That’s why there’s a great need to increase awareness of the Celtic Curse in the general population and in the medical community.
Which brings me back to the Iron Disorders Insitute. It is an institution worthy of support. My wife recently completed a detailed study the Institute is doing on the experiences of hemochromatosis sufferers. My guess is that it will reveal a shocking lack of knowledge about the Celtic Curse in the American medical community, and a dire lack of treatment for all its effects.
How Irish is the Celtic Curse? Across Europe as a whole the chance of someone experiencing iron overload is one in 400; in Ireland, it's almost five times higher at one in 83. And one in five people in Ireland carry the gene that can lead to this condition. Of course, the problem is not confined to the Emerald Isle. With so many people having emigrated from Ireland to North America over the centuries it shows up pretty widely here as well.The article is a good introduction to the condition with enough detail to give you a clear picture of the implications without getting too technical. It's also an interesting non-American perspective. What it does not explore in much depth is the distinction between treatment of iron overload and treatment of organs damaged by iron overload.
In other words, it is relatively easy to reduce iron levels through blood donation, not so easy to cure the damage to liver, pancreas, heart, joints, and various parts of the endocrine system. Indeed, some of that damage, due to failure to diagnose hemochromatosis at an early stage, can be permanent and leave a person–as in my wife’s case–with a pretty miserable quality of life. That’s why there’s a great need to increase awareness of the Celtic Curse in the general population and in the medical community.
Which brings me back to the Iron Disorders Insitute. It is an institution worthy of support. My wife recently completed a detailed study the Institute is doing on the experiences of hemochromatosis sufferers. My guess is that it will reveal a shocking lack of knowledge about the Celtic Curse in the American medical community, and a dire lack of treatment for all its effects.
I agree that american doctors are not actively testing patients for this discorder. I left the US to work in Vienna for a year and it was only there, that an Austrian doctor determined my condition following what is a rouitne ferratin blood test. At 34, I was very lucky that there was no permanent organ damage. My levels were ~75o with a normal level being <30. According to my US doctor, who also said I was fortunate to have had this test performed in Europe, said organ damage can occur at around 1000 levels. I was likely only 5 years away from damage to organs like my heart and liver. Get tested for iron overload in you are a male with any Northern European decent and especially if Irish. The good news is that the blood letting is the perfect and simple cure. Infact, my levels are <20 for the last 3 years and I only need to donate a unit 3-4 times a year to maintain. I may end up healthier than most as my iron stores in my organs is now less than most "normal" people now. Get checked before your 30 if possible....Women essentially get fresh blood monthly following menstruatuion (till ~50y/o) This is why they often dont have complications and may be why women live 7-8 years longer than men in general...
ReplyDeleteI had thought that Rosacea was the "Irish Curse."
ReplyDeleteResearching for my son . My mother had it & my uncle died from it at age 47. My other children tested positive for carrying the gene. Yes we are irish 100 percent on my mothers side & scotch Irish on my dad's side of the family.
ReplyDeleteHi I have just been diagnosed with heamachromatosis , I was getting worried as my arthritis was getting worse and I have blurring in my left eye, and slight tremor in my left hand, It was only by chance my doctor took blood test and came back very high in iron , so they did more test , and it came back very high in genetic ferritins. I then had a scan on my liver ,I have got iron in my liver but they think they have caught it in time, I have my first transfustion 22nd april 2014, hopefully they have caught it in time. I think they should test everyone for overload of iron, it would save a lot of time ,money ,stress and lives. if detected early.
ReplyDeleteThank you for sharing. We agree, the right thing to do is screen everyone as part of their annual physical.
ReplyDeleteI was diagnosed with it at 32 which is rare for a woman I hear. I was taking a birth control pills that caused it to show very early. I have since stopped taking that and donate blood often. I had to switch doctors to find out what was wrong with me. My current doctor found it, she knew what to look for, she has it too. My last doctor thought I was a hypochondriac but I knew something was wrong. I was exhausted all of the time, had severe stomach pain , and my hair was falling out. I thank God for my new doctor every day. I am still trying to get my brother to get tested.
ReplyDeleteI have recently been diagnosed with Heamochromotosis. My Iron level is 2003, have just had another test will be interesting to see what it is. How my Iron is increasing between tests. I find this messes with my head. I know I have elevated Liver readings. I have not started with Blood donation as yet. Mine was picked up because I got a rash, so have been on steroids to get rid of the rash. The specialist does not think the rash and the Heamochromostosis are related, but he thinks the rash has something to do with my immune system. I would think that both are related. It seems both my parents had the Carrier Gene. So I have C282y mutant Gene. Homozygos. Trying to stay positive is very difficult. Especially when you know your levels are in the danger zone.
ReplyDeleteWe appreciate you sharing your experience Sabrina and wish you good results with your treatment.
ReplyDeleteMy story of diagnosis starts with a thyroid goitre that got larger over time
ReplyDeleteAge 32-38 tests all inconclusive including several biopsies
Ignored it
Then it just was there the lump in my neck
Family bugged me
I'm a nurse!! Yes we ignore ourselves just like everyone else oh it's ok
It's not cancer etc hashimotos etc
Post surgery surgeon said "hashimotos thyroiditis"
Back to regular life
But post surgery I felt worse
Yes low energy
Yes maybe some mild depression
Achy joints?
Belly pain?
Foggy brain big time??
I though crap post anaesthesia effects
Went to doc
Demanded cajoled for a baseline on basics
Voila ferritin 550
1.5 yrs later normal doing well
3 family members now know they have it
2 died because too late detection
I'm Scottish Irish German and Dutch
I tell everyone I meet to get tested who has north euro genes
Heather
I have haemochromotosis. I was told so by a doctor doing bloodwork. I feel fine. I am getting blood testing further done, to treat this, and to track ferrous plasma levels. I have been avoiding spinach and other green leafy vegetables. I have been drinking distilled water, in the theory, theory only, that it may help leach iron from my body. I have been vegetarian for 49 years and am aware of mineral balance necessity. Vitamin companies offer vitamins without iron, so the issue would seem to be widespread. One of the planets' great herbalists, David Bruce Leonard, ( we get most of our medicines from plants ) has suggested Alisma plantago aquatica; he also suggests Ze Xie, available from your local Chinese herbalist. I will be researching Ze Xie. The Chinese have only been at such research for five thousand years, but I am going to treat with both, one at a time, read all the research available, concerning all ingredients in Alisma, and Xe Zie, and see. You are the ultimate decider of your own health. Bloodletting works. It may be the source of "feeling better" as to haemochromotosis. Bloodletting for better health is 3,000 years old
ReplyDeleteAnd you can donate blood if you have no transmittable diseases...