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| I HAVE BEEN IN AND OUT OF THE DOCS FOR THE LAST TWELVE MONTHS.TODAY I GOT A SECOND OPINION,MY NEW DOC SAID "ALL I CAN DO NOW IS GIVE YOU A TEN DAY COURSE OF STEROIDS,IF THAT DOES NOT WORK,WE HONESTLY DONT KNOW WHAT TO DO NEXT."MY FEET,ANKLES,LEGS,FINGERS, WRISTS AND ARMS ALL SWELL UP.THE PAIN WAKES ME DURING THE NIGHT EVERY NIGHT"THEN A BREAKTHROUGH I REMEMBERED MY FAMILY WHOM I DONT CONTACT SAYING MY BROTHER WAS SICK AND I SHOULD GET CHECKED AS IT WAS HEREDITARY.AFTER CONTACTING THEM THEY GAVE ME THIS NAME,NOW I AM AT YOUR WEBSITE WILL SEE DOC FIRST THING IN THE MORNING AND GET BACK TO EVERYONE.MANY THANKS | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Can anyone tell me if they have problems with their feet and ankles with this condition. Both my brother and myself have one gene and experience the same but I haven't read anywhere of anyone with similar symptoms. It's best described as swelling from the mid shin down, I like it to walking around with a pair of rubber boots full of cement. Can anyone help with advise or a similar story? |
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| I'm 29 female and have both of the haemochromotosis genes. I was diagnosed at 23. I bleed reasonably heavy with my monthly period so this can sometimes attribute to my control of the disease. I have regular blood tests to check my levels and generally only need to have a venesection "blood letting" around 3-4 times a year. There are a couple of things that have helped me gain control of this disease. Firstly read your food labels! Anything with added iron or added vitamin c can help build up your iron levels and remember to check any multivitamins your taking(I still have the occassional milo!). Keep up your regular iron level checks. I also have a liver ultrasound and an ECG every two years (this is precautionary only and some Drs may find unnecessary). When you see a naturopath remember to tell your GP what they suggest you do, a GP is your best defence against this disease. Lastly remember to have regular checks on your iron levels and don't go completely overboard- lots of people end up iron deficient. Blood letting is uncomforatble, but talk to your GP, My GP has now found a way to venesect with a slightly smaller needle to help eleviate this. Good Luck. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi my 'dad' (friend's dad that i 'adopted' LOL) has it and gave it to his daughter (my friend) they have too much iron so they have to have blood taken out every 3-4 months, they found that Red cross in Newcastle take the blood for his daughter (she's at uni) or the pathology in Forster takes the blood for him. I will ask them if i can give you thier email for help at all. |
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| Hi I have just read your post about your daughter and just had to respond. We found out by accident that my father has Haemochromotisis many many years ago. His treatment has seemed very random and experimental for many years. I was tested and I have the gene for it although I show no symptoms as yet. I have a 17 year old son and 15 year old daughter that have not yet been genetically tested. I was told that because of monthly periods I should not show signs of damage for many years, but still it isnt something I am looking forward to. I hate needles (as does my son) and it took me ages to get a doctor to agree to a genetic test because they simply did not see the need for it because I show no symptoms. My father's ancestry is Irish/English. There are different types of Haemochromotosis. I would like to keep in touch if you wish. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| I am a 23yr old female, and just recently had a full blood test which shows I have a high iron count. I donate blood regualarly, and my Dr says I should keep doing that. Mine isn't abnormally high but I wonder if it would be worse if I wasn't giving blood which I have been doing since I was 18. I don't have any family history of this either, one time I couldn't donate blood because my haemoglobin levels were above average. So basically, for me it's not really a problem (I hope!) but it does exist out there for the young. Now that I am aware I can keep it in check though, because apparently long term it can have a destructive effect on the liver. |
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| My ex's new wife suffers from this, and was diagnosed at around 30. Apparently she has a diet with low iron intake combined with regular blood donations to keep this under control. As your daughter must have sufficient iron supplies in her blood, the effects of the donation are most likely related to dehydration and low blood sugar, lots of fruit juice and water should help. Good luck! |
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| Even if you are not young; feel free-but I am looking for anyone who is young and has the problem. My 22 yeasr old daughter has found she has blood iron levels ,which would indicate she may be suffering from haemochromotosis-which is a worry. I had a friend of 55 who died of the diseae in the end. My daughter only found out; when she looked at her last blood test results and then discovered a test previously had shown the same result but no one had bothered to notify her of this discrepancy. It apears neither of us-her parents;suffer from this problem. Tho I did note from Norman Swan's interview on the subject with DR Liz Jazwinska; that it is a disease of celtic origins-I have Manx heritage on my side and husband has Irish. She has gone for a couple of tests and wasnt happy with teh attitude of the specailist she saw. Her GP said she had a number of women patients with this problem-but turns out they are mostly post menopausal women.My daughter is only 22 ! It appesrs the only easy solution According to DR Swan is simple blood letting. ObviouSLy ,the old leech Drs-much maligned;who believed in blood letting for too much blood;really did have some han dle on it-tho they may not have known the scientific connotations. Problem for my dtr is;even when she gives a blood; test it takes her two days to recover from it;so the thought of coughing up a pint fills her with dread. She is going to see her naturopath; to see if he has any suggestions and then may go back to the specialist. She seems to be suffering migraine like headaches that last a day or two lately and I wonder if this may be due to this problem. MY friend-didnt have a uterus;so didnt have the bleeding capabilites of most women, that keep it under control;in the end ;the liver damage -which led to brain damage -then dementia and finally death;was an aweful process-with Drs experimenting on her along the way. I don't want this for my daughter-any help from anyone young with a high blood count ... |
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