Irish warned of blood condition known as the ‘Celtic Curse’

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67 Responses

  1. Margaret Fitzgerald says:

    I have this along with a brother so 2 out of eight both parent Irish along with all family
    Brother nearly died with it our blood letting is constant and I feel hung over every morning like I had been drunk the nites before but it can shoot up as quick as anything so when I feel really tired etc I no my irons up or ferritin also the iron can be tasted in my mouth that it also can affect your teeth badly

  2. Rhonda potwin Robinson says:

    My dad, Paul Potwin has this and he goes up to DHMC to have blood drawn which has caused sirrious of the liver. My siblings have been tested. I’m anemic so I don’t have enough iron

  3. C.Dorrity says:

    My husband died from this condition almost seven years ago.Despite having many of the symptoms for over two years and constant doctor appointments he remained undiagnosed until too late—in fact just one month before his death.Our children were then tested and it was discovered that five of them inherited this condition to various degrees. Fortunately they have all received the necessary treatment and continue to do so.

  4. Gena says:

    A liter of tomatoe juice a day. Is it w/or without salt? How does it help, please?

  5. Tony Lillis says:

    I was diagnosed with Haemachromatosis in 1988 when I was 41 with a very high ferriton reading. I had a venesection or a Phebotomy every week for two years to reduce the iron levels. A liver biopsy was initially carried out and some chirrosis found in the liver. I refrained from drinking alcohol for two years during the dilution process and my energy levels were restored to normal , as distinct from being exhausted every evening after work. Forty years later I continue to have a venesection but not with the same frequency . In fact four blood lettings a year seemed sufficient to control the ferriton levels. Lately , I’ve noticed that the reduction in ferriton is not as effective as it was in my 50’s and that the four venesections that I have had in the last eight weeks have, merely reduced my levels from 230 to 150.
    Arthritis , which is another symptom of the ailment , is under control , though I try to control my diet , and play golf at least twice a week . Exercise and weight control is very important and if I allow my ferritin level to spiral out of control , my cholesterol levels tend to rise , but can be reduced by consistent blood letting. The veins on my arms are now so used by constant puncturing, they tend to be gushers , so I have asked my Doctor to move away from the elbow vein and move further up the bicep , which is equally as good a vein for a good flow.
    Insurance companies refused to insure me as their Actuaries told them that I was a bad risk , but thirty years later I have survived.
    My blood pressure was also moving to a serious level of 170 over 100 , but since I started cutting down on Alcohol and drinking a litre of Tomato Juice every day , It comes in now consistently at 127 over 70 , I have made no other changes to my life style to explain such a change.
    Three members of my eleven siblings have also been diagnosed with Haemochromatosis , two male and one
    female , two have died of non related illnesses .

  6. Austin Stewart Mcloughlin says:

    No their are treatments for it,my stepfather had to much iron in his blood,but never suffered from fatigue,his doctor took blood from him regularly.

  7. Austin Stewart Mcloughlin says:

    Stewart. Hello had a stepfather who suffered from this,his surname was Shaw,l presume is an Irish name,he would go bright red in the summer months,his doctor took blood from him,but he never suffered from fatigue,he was always doing something in the garden,had more go in him than myself,26 years younger,but died of heart failed at 79,a good age.

  8. Austin Stewart Mcloughlin says:

    Hello. This symptom didn’t run in McLoughlin family,but my stepfather Harry Shaw,Shaw is Irish decent,don’t know,l think it is,anyway he would go bright red in colour in summer,the doctor took blood for him,he never suffered from fatigue though,had more energy than me,20 odd years younger,and was always doing something,pottering about in his shed or garden.never suffered to much,minor stroke once,but he got over that,but died of a heart attack at 79,he went quick,when the time came,he had more go in him than me.

  9. Galtyboy says:

    My son-in-law has this and so does his dad. Now I’ll be able to put an name to it. Thank you.

  10. F. C. Lynch says:

    not nice, but funny! Wish my case gave me rust colored hair. Hemochromatosis is not just peculiar to the Irish. It is found in a large percentage of eastern europeans. Going back to ancient times, it was natures way of survival. The iron was stored in your organs to help humans survive famine etc.
    I was treated very aggressively for a period of time, and I have maintained a acceptable level for 4 years.
    I was very lucky, the doctor said he wished all of his patients responded as I have.

  11. Daniel Shine says:

    Greetings From the South Side of Chicago. I was made in America with Irish parts. A cousin learned he had this disease and suggested that I get tested. I was sluggish and figured it was my working the midnight shift and a poor diet. I shed some weight and began giving blood once a week. I had a biopsy of my liver and get an ultra sound every year. No signs of cirrhosis. Thank God. It’s like changing the oil on your car. I feel great and keep up on my phlebotomies. Good Luck.

  12. Laura O Leary says:

    100% Irish born and reared,never heard of this before,but have been I’ll for 12 years now with no diagnosis and I suffer symptoms mentioned emmmm worth looking into

  13. Dave Lane says:

    It could be but ferritin count is what you need to be tested for. I have been on a maintenance program for 35 years. I still have a high CBC count 14-16 but maintain a ferritin count below 50 normal is like 150-200. Doctor keeps me at that level.

  14. Sarah Marble says:

    I was diagnosed with HCT in 1999 while taking pre-natal vitamins in the early pregnancy with my daughter. I was very ill and experiencing mini-strokes. My blood was too thick. The Dr. at the hospital said my iron levels were off the charts, so they did a major bloodletting and I instantly felt better.

    Several years later, I became ill again. This time, they found I was completely void of B12. I began an injection regime and now manage it all with B12 sublinguals, as close to a zero iron diet as possible, and folic acid supplements. If I start to feel bad, I give blood.

    During the B12 incident, the doctor found that my red blood cells were half their size, but twice what they should be in volume. I should have been severely anemic and much worse off, but wasn’t because of the haemachromatosis. So, a curse, yes.. But a blessing too?

  15. Mark McCoskey says:

    I was diagnosed 2 years ago with HH (homozygous C282Y) when I was entered into the hospital with Congestive Heart Failure. I had a ferritin of 26,205. Gave weekly 450 ml phlebotomies for a year and about 8 months. Am now in maintenance.

    https://www.facebook.com/groups/2261354733/

  16. Erin says:

    My son who is 26 was donating blood and they told him he had to much iron in his blood and he suffers from stiff joints,fatigue and one other problem wonder if this is what it. Blood bank loved him aid his blood was great. We are Irish descrnts. Grandma born and raised in Dunsmore,my father born in states but raised first 10 yrs in Dunsmore. I suffer from fatigue, joint pain too and anemic. My mom has pernicious anemia.

  17. Karla McDonald says:

    Because my wbc’s were elevated in test after test, I was referred to a cancer specialist. My diagnosis was MDS (Myoproliferative/Myelodysplastic Syndrome) and CMML (myelomonocytic Leukemia). It is “chronic”, not “acute”. This explains my low immunity and fatigue. Good luck, Patsy, with your search! By the way, I live in Texas, USA. Very fair skinned, freckles, reddish blonde hair, blue eyes, and my daughter has beautiful red hair, fair skinned with freckles. My father’s side of the family is McDonald, while my Mother’s side is Moore. So, I love Ireland!

  18. Anne says:

    Thank you very much Mjb for your comment. Kind regards Anne

  19. Anne says:

    Dear Peggy
    your reading of 16.6 sounds like your haemoglobin result which is the iron in your blood.
    To test for iron overload you need to get your ferritin, iron serum and iron saturation levels checked which is the iron levels in your tissue and organs. Your GP should be able to carry out this test for you.
    There is an excellent American web site :- Hemochromatosis.org
    Have a look at it. At the end of the site there are downloads which you can print out . They have all the details on the condition. Hope this helps. Kind regards Anne X

  20. Coleen Bucca says:

    Both of my parents were from Ireland. Dad got the gene from both parents. They took 28 pints of blood until his blood stabilized. His nephew has it, but not my brothers. Strange that while he was giving up pint after pint of his iron rich blood, I was in the chair next to his getting infusions of iron ! But they could not use an imperfect part. Go figure

    I asked sn

  21. Patsy says:

    I am Irish/Norwegian and my Mother (Irish), my brothers and I all have a high white count to the point that Dr.s immediately think we are about to die from leukemia. Thankfully, we have had no one with leukemia in the family. Dr.s wanted to do a study, my Mother and I both wanted to we could not get my brothers to do agree so Dr.s would not do it. I wanted to find out if there was some way our blood could help others.

  22. shannon kennedy says:

    I was 54 when I was diagnosed. My heritage/ancestry is Irish/Scottish (3rd generation stateside). It was my ferritin level that alerted my doc. It was almost 1000 should be 50-75. My hematocrit and hemoglobin were 18.2 and 39. My symptoms were fatigue, irregular heart beat, heaviness, and quick to rise heart rate during exercise. So 16.6 is borderline high and might warrant a trip to the lab. Nothing to mess with. My 30 year old son was just diagnosed with it and his pancreas has already been affected. I have monthly dates with my local vampire bar and that keeps in under control.

  23. Kim Hickey Schmitt says:

    We are of Irish decent, my father was diagnosed with the disease but I really don’t think they real knew much about it! He had blood taken every so often. I think it was to late by the time they found it! He had already developed liver cancer & Bladder cancer! It was only about 6 month and he was gone! Some of the family have been tested, I don’t think the right kind of testing has been done tho! I have 1 cousin that does have it! I thank everyone for the information! I will definitely do more research! God bless all of you!

  24. Peggy Buchanan says:

    My iron is 16.6. Could this be a sign of high iron…USA

  25. Mjb says:

    Well said Anne!

  26. Patrick Doyle says:

    You also go an nice orange colour in light rain.

  27. Patrick Doyle says:

    Yes it’s a symptom called bronzing it starts under your arms it will cover your arm and upper body and won’t go away.even after treatment.I started with levels of 23000 and 99.9% saturation rate.

  28. Bonnie says:

    yes! does your gp have you supplement and do you have to go in for regular testing and intermuscular injections as well? My gp called it pernicious anemia or the queen victioira/ dracula effect for lack of common definition. I had to doeal with years of torment and still do until treated. pernicious anemia is definatly a curse! I am directly decended from Aufrick of Man on one side and James 1/6 on the other. my entire family is now undergoing the genetic testing so our drs can do a full study. i am so glad i clicked this link!

  29. Bonnie says:

    I was diagnosed with an alternating form of pernicious anemia.

  30. Bonnie says:

    Same here, it took 25 years to finally properly diagnose me and then all they could really say was that it was due to my northern european/celt/gael lineage. I have to manage mine with weekly cycangobulin injections, diet and awareness of onset. if i forget any of my routine it takes months to sort back out.

  31. Priscilla says:

    I am from Irish decent and have been reading about this Celtic Curse.. I was told by a doctor that I make to many red blood cells and they die off quicker. Is this possibly something similar to the Celtic Curse? For example (not correct numbers) average person makes 50,000 red blood cells a day my body makes 300,000 a day. I have the fatigue and joint pains and have heart issues as well. Is this part of the curse or just an entire different thing?

  32. margaret martin says:

    Hi Bill, our family has ancestry from Ireland and of us 4 children my brother is the one with the ‘Irish Curse’ and we live in Glasgow. My brother got the test done at his doctors and his treatment for this blood disorder was going every week for a year to hospital for a pint of blood to be taken fro him to dilute this. As far as I know he had either one or two hip replacements and heart surgery. He is now on different medications for his blood. But he was back at work as soon as allowed and is still working away. Hope this is helpful to you or anyone with this condition.

  33. Anne says:

    I have been recently diagnosed with Haemochromatosis and saw a Clinical Genetics Specialist last week. He told me as well as Celtic Irish, Scottish, and Welsh, White Europeans are also affected with this condition eg. English, French, Swiss, Norwegians, Austrians etc. there are many more people affected than originally thought. Many Doctors still think that iron overload is a rare condition. In a study of persons with haemochromatosis, patients reported that they had to see up to eleven Doctors before they were correctly diagnosed and one fifth reported that this process took up to ten years by which time serious organ damage had been done. Many of the symptoms of Haemochromatosis are similar to other ailments eg. Fatigue, joint pains and depression. These are too often confused by Doctors. Hereditary Haemochromatosis is the most commonly inherited disease.
    Hereditary Haemochromatosis is a genetic disorder of iron metabolism. It is not a blood disease. It is inherited from your parents, you cannot catch it. It is easily detected by a simple inexpensive blood test. You need to ask for a blood test for:- haemoglobin, serum iron, transferrin iron saturation percentage and serum iron. This test can reveal elevated tissue iron levels. If they are elevated Doctors should then carry out a HFE blood test which is the test that will diagnose genetic Haemochromatosis. I hope this information helps everyone. Good luck! With best wishes to all and many thanks to Ireland-calling for posting this and raising awareness of Haemochromatosis. Kind regards Anne.

  34. Tessa Wood says:

    How does this relate to Hugh’s Syndrome or does it? Could Hugh’s be part of this condition? My dad had it and I have it and there are no treatments for it. Thanks!

  35. Anne says:

    Dear Vivian
    If you tap on your reply you can copy it by tapping the word copy and when the words change then tap on the word paste onto a word document or email page whichever you want.
    Please see web site :- hemochromatosis.org (American spelling)
    Excellent website which gives all the information you would want to know about haemochromatosis plus downloads. Hope this helps!
    Kind regards Anne

  36. Anne says:

    Dear Bill
    If you have haemochromatosis in your family you must have this simple blood test which will identify it. If not diagnosed and treated it will cause serious damage to major organs.
    Please look at this website :- hemachromatosis.org. (American spelling) If you scroll down to the end of the site there are pages you can download which tell you if there is a diagnosis in the family that all blood relations must be tested for the condition. There is also a letter on one of the downloads to send to family members informing them, and telling them not to ignore the letter.
    If you could print off this information and go back to see your 2G.P. He/She is in no position -_to refuse this inexpensive blood test. If they still refuse insist on seeing another Doctor and make a formal complaint against the G.P. This condition is very serious, if not diagnosed and treated it causes serious damage to major organs. I have recently been diagnosed with haemochromatosis and have carried out a lot of research to find out as much as I can about it. Gook luck with it all!!!
    Kind regards Anne

  37. Anne says:

    Dear Bill
    If you have iron overload, you must not take no for an answer. If you told your G.P. Haemochromatosis is in your family they had no right to refuse this simple test which would identify it. It is a very serious condition and if not diagnosed and treated it will cause serious damage to your heart, liver and pancreas. I have recently been diagnosed with it.
    Please look at this website :- hemochromatosis.org (American spelling)
    If you scroll down to the end there are pages you can download. Some of them tell you if there is a family member diagnosed with haemochromatosis all blood relations must be tested for that condition. There is also a letter for family members informing them that you have been diagnosed and they must be tested. If you could print off this information and bring it to your G.P. He cannot refuse and if he does I would insist on seeing another doctor and make a formal complaint. Good luck!
    Kind regards Anne

  38. Maureen frodsham says:

    Ime living in England and of Irish descent l suffered from severe joint pain and fatigue for 10 yrs After paying for private treatment l was diagnosed with porphyria cutaneous tarda a sun related condition but the severe joint pain and fatigue continue On hearing of a relative who had genetic Haemachromatosis l thought that’s me l spoke to my consultant and he sent me for genetic test which confirmed possitive of the faulty gene l was delighted that an answer to my pain and fatigue wasn’t just age related l had to have 32 pints of blood removed from till my iron levels at got to an acceptable level and then the consultant realised they had over venesections me and l needed blood transfusion Thankfully no damage was done lme now stabilised and l have a blood test every 3month to check for ferritin levels and at an average have 2 venesections per year and regular liver scans

  39. Bill Scott says:

    Hi . My mother is of Irish decent sadly passed away . I have a condition called Vasculitis Microscopic Polyingiitis and have had now for 6 years . I was in Ireland last year and met up with one of my relatives who has the Celtic Curse Blood condition. We did disguse the two different conditions to find I have many of the symtoms that go with the Haemochromatosis. It was said I should disguse this with my own doctor on my return home . As it is only a blood test thought it would be easy to get tested but has refused to do so . I asked if I was to pay for it to be done but no not in this clinic . I know I do have high iron content as was taking meds to reduce the iron in the blood 5 years ago . So answer is its not as easy to be treated in Scotland for the Celtic curse . So I will just have to stick to my 47 tablets per day
    Thanks for reading

  40. Judy Zetts says:

    Interesting about the Irish. My father in law had this and he was full Slovakian. It was passed to,1 daughter out of 5 children.

  41. I have recently been tested and found my first level was 575 and 6 mos later is down to 465. I have one gene but both parents are deceased so I have no way of knowing if they both had the gene. I assume not. I do not have to phlebotomized yet but dr. said level can go down by reducing iron high foods. Will do this. I mentioned restless legs to my dr. and she ran a genetic testing for iron and that’s what started this. I am so grateful to this site that just came on Facebook. I got to read so much more and hear from other sufferers. Thank you all for sharing your info. How can I get this printed for my own reference? Can anyone help me there? God bless all. I too, am Irish American, great grand parents came from Ireland. Will tell my children to get tested too.

  42. Iam Native American, my husband is Mexican from Mexico, found out we were both carrier’s when. 2 of our 5 daughter’s were miraculously diagnosed, Thanks to the undo dilgence of a wonderful woman Doctor who would not give up on her as others did.They actually use to prescribe iron ! So much ignorance out there, people stating” Were not Irish ! we don’t have to be tested !” The percentage nationwide is staggering, do yourself a favor, get tested.

  43. Amy says:

    Out of a family of 9, my sister and I have it. The unlucky thing is – we also have a chronic hemolitic anemia where the red blood cells destroy themselves constantly so we are super anemic. This means we cannot be phlebotomized for the iron overload, nor can we be transfused to help the anemia because it will impart more iron into us. Both of us have had gallstones and gall bladder removal because of the disease. I had a spleenectomy because of it as well. There is no cure; we are required to have a strong medicine called Deferoxamine infused intraveneously or subcutaneously in order to chelate the iron. When my hands begin to ache, I know it’s time to have my iron checked. We are Irish American (my grandmother emigrated from Co. Mayo in 1913.) Cheers and blessings to all.

  44. Anne says:

    I was recently diagnosed with this condition. All blood relations must be tested for iron and ferritin levels if a family member is diagnosed. This is not a normal blood test. There are so many people that have never heard of haemochromatosis. There is an excellent American website which explains everything. It is:- hemochromatosis.org (American spelling)
    Thank you Ireland calling for this post. Please post it on a regular basis to RAISE AWARENESS of the condition. Many thanks!

  45. Carol says:

    Hemochromatosis is not a “blood” condition at all. The iron does not build up in the blood. It stores in the organs and tissues.

    The description of treatment being “required to have a unit of blood removed” is overly simplified. It requires a unit of blood to be removed as often as twice a week for months and then a maintenance treatment of a couple of units being removed a year. It’s certainly not as simple as “a unit of blood”

  46. Geraldine Shapley says:

    My husband was diagnosed with haemochromatosis in 2012 with levels of 7200 this had affected his liver and in January 2015 he died. He had been giving blood every week for two and a half years before he died.

  47. Ton Deegan says:

    Seamus, thanks! got recently diagnosed I have all of your symptoms! to be a type 1 diabetic as well just sux!

  48. Enid Fox says:

    Jane, carriers of just one gene can overload also. There is more than one gene for HH. Some people can carry two different genes for it, c282y is the most common. But, you can also carry c282y with h63d or s65c. I’m speaking from personal experience. Compound heterozygotes can load ferritin, you don’t have to be homozygote to load.

  49. seamus breslin says:

    I suffered for 9 years before being tested…… my iron level is 2,700 sky high ….. I put the symptons down to other things ….had terrible depression , joint pain and fatigue…. get checked….Derry.

  50. seamus breslin says:

    I suffered for 9 years before being tested…… my iron level is 2,700 sky high ….. I put the symptons down to other things ….had terrible depression , joint pain and fatigue…. get checked….

  51. Patti Keene says:

    Terry, I am a red-haired Celtic woman and I think your comment was hilarious! Thank you ~ you’ve got a great Irish sense of humor as well 🙂

  52. Joy James says:

    My Dr says I have iron stains under my skin from an injury.Now I wonder…I’m 50% Irish.Could this be a symptom. I do have the other symptoms.

  53. pat pruden says:

    Re: blood letting….just goes to show that the most macabre treatments might have a basis in reality!

  54. Jane Lyons says:

    You don’t get this disease from one gene. You have to get a gene from each of your parents. If you have one gene you are a carrier, if you have two genes you have the disease.

    I was diagnosed in 2012 and my ferratin levels were at 2400. I gave blood on a two weekly basis for approx 18 months. My ferratin levels are now at 41 and I have not given blood since Nov 2014

    In the comments above a person said how they don’t eat red meat but do eat fish. Fish has a higher level of iron than red meat believe it or not. Chicken is the only meat that does not have iron

  55. Carolyn Henderson says:

    I thought that to be funny Terry, funny how one comment offends one person and yet makes another laugh.
    Oh by the way I have rusty hair colour…and Irish ancestors.
    All the iron must have gone to make my hair its colour as I get iron injections

  56. Mary says:

    Not a very nice comment Terry .

  57. Teresa says:

    Was diagnosed when I was 60. My sister had been suffering from extreme fatigue, was tested and confirmed that hers was a genetic condition. She recommended that we all (her siblings) be tested. 6 of the 6 have it. I gave blood once a week for 4 months until my iron level was below 100. Now, I have been going once every 6 months and it has so far been manageable. Thankfully, it was caught before any organ damage.

  58. barbara says:

    My dear husband of 52 years died in 2014 from this disease even though his liver tests from the time he was young were never normal. He went undiagonsed until a few months before his death and by that time the damage to the liver was untreatable . Every Dr. he seen was informed that his grandfather, uncle, father and sister died of liver failure and not one except the one treating him in the end picked up on hermochromatosis. Our sons have been tested and the youngest has the gene, and one of our grandsons from another son has the gene Our youngest has had 2 blood draws and maybe facing at least one more to get the iron levels within the normal range. Since he was diagnosed by age 40 he should live a normal life span. We found all the Dr.’s treated the problem symptoms but were clueless about what was wrong in the blood.

  59. Terry Collmann says:

    One way of telling if you have too much iron in your blood is if your hair is rust-coloured.

  60. Mamalove says:

    Rest in peace Gary Lane…
    no one knew until it was too late.

  61. deborah swaris says:

    my bloods came back over 50 and was tested for this cont ion and was told no do not have although have most off the symptoms the only one i know off in the family with it was my late aunt on my mothers side has anyone else been diagnosed as not having it but later to find out that they this have this cont-ion would love to hear from anyone that had this experience regards deborah

  62. Tim Mabry says:

    I was diagnosed with Hemochromatosis (American Spelling?) about 10 years ago and have treated it successfully through regular phlebotomies.

    I had a hip replacement 4-5 years ago and the doctor alluded to the fact that Hemochromatosis may have been the root of the problem.

    I since have talked to other “sufferers” who have had to have joint replacements and in a few cases multiple joint replacements, for no other apparent reason.

  63. Mandy huxley says:

    I myself suffer from this. I get a VS each month to bring my Ferritin Levels down. Im also feeling very tired at all times an suffer with severe joint pains an im not even in my 50’s yet.

  64. Mickee says:

    myself and my two sisters have it ,
    but the type I seem to have is different, to both of my sisters Iam able to manage my Iron level very well ,
    and have been able to keep it between 50—150 so I don’t need to have blood taken bi watch my diet and the iron content in foods ,I don’t eat red meat or eat green veg due to too much iron I live on fish, chicken,and other veg and have an great healthy life Iam 49 yrs and have know about it since I was 45

  65. Alice says:

    Reminds me of the “cures” in Medieval times – blood letting.

  66. Maureen d'Arcy says:

    My uncle in Canada and an uncle in Philadelphia were diagnosed with the condition. They give blood regularly. They are 82 and 84 respectively. They are always very energetic. They are the only ones living as they are the youngest of 10 in the family.
    I heard of none of the others having it.
    My brother got tested in New York and has not got it.
    None of my siblings got tested but don’t have any symptons.

  67. For more information on genetic haemochromatosis, you can visit http://www.celtsofiron.com

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