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Hemochromatosis

• Message 1. 

  Posted by PepperTree (U10855001) on Thursday, 2nd April 2009

  
  Bit of a blunt heading, I know. Looking to hear from anyone who has been diagnosed with this disease, or knows of anyone else who has.
  
  

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• Message 2

  , in reply to message 1.

  Posted by orangetip (U3980471) on Thursday, 2nd April 2009

  Thu, 02 Apr 2009 12:54 GMT, in reply to Pepper Tree in message 1
  
  PT, got about 1 minute to reply but will try to get back later. OH's sister has it - inherited, recently diagnosed. AFAIK (she's in Oz & not talking about it) it's treated by having blood removed regularly. OH meantime has a DIFFERENT inherited liver disease.....also recently diagnosed

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• Message 3

  , in reply to message 2.

  Posted by PepperTree (U10855001) on Thursday, 2nd April 2009

  Thanks orangetip. Yes, it does involve regular bloodletting but the disease can cause irreversible damage to the organs, including the liver, if not caught in time. There is plenty of stuff about it on the Internet but I am interested to learn of the practical consequences for sufferers rather than just have to rely on written medical observations.
  
  Am in a rather lonely place at the moment!!
  
  

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• Message 4

  , in reply to message 3.

  Posted by Urban Yokel (U1485670) on Thursday, 2nd April 2009

  I used to work with a guy with this. He used to have blood transfusions about three times a year but apart from that I don't think it affected him at all. He seemed to live a normal life, eat and drink what he wanted, go on holiday etc. I think that once you get the initial levels down then it is more of a monitoring thing rather than any sort of treatment.

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• Message 5

  , in reply to message 4.

  Posted by Oz (U6102444) on Friday, 3rd April 2009

  What particularly do you need to know.
  
  If it isn't actively treated organ damage. Cardiac failure and liver disease.
  
  
  
  
  or
  

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• Message 6

  , in reply to message 3.

  Posted by EurekaBlitzen (U11200477) on Friday, 3rd April 2009

  Pepper Tree: I cant offer much here, but I do care, and offer caring ((Hugs)).

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• Message 7

  , in reply to message 1.

  Posted by metro-mouse (U3068238) on Friday, 3rd April 2009

  A friend has it, she gives blood every three months and that is it, she eats and drinks normally, leads a normal life and is very healthy and is held in high regard by the blood transfusion service; do they still give the gold badge to those who have donated 50 gallons? mm

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• Message 8

  , in reply to message 7.

  Posted by PepperTree (U10855001) on Wednesday, 8th April 2009

  Thanks for all the responses. I do of course have access to all the published information but I was just wondering if there was anyone out there that had the disease, how they were coping with it and any other general observations. It's all the worries about the greater risk of liver cancer, heart disease, etc., etc. that is so alarming.
  
  I have to give my blood (an 'armful') every week and this is likely to have to continue for about eighteen months or more. It's only when it is under control that blood is taken every few months.

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• Message 9

  , in reply to message 8.

  Posted by orangetip (U3980471) on Wednesday, 8th April 2009

  Wed, 08 Apr 2009 13:03 GMT, in reply to Pepper Tree
  
  
  Hi PT sorry I haven't been able to get back to you before. Can't help much as OH's sister is an active alcoholic with a lot of other health issues, so getting coherent information out of her is quite difficult. One thing I can tell you is that OH's inherited liver disease, which is definitely not hemochromatosis, also gives an increased risk of liver cancer, and because of that he's been scheduled for regular scans and been told that if anything suspicious appears it will be removed immediately using a biopsy-type technique.
  
  

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• Message 10

  , in reply to message 9.

  Posted by funnyjazzbaby (U7471339) on Thursday, 9th April 2009

  Pepper Tree.
  My maternal grandmother had this disease but she died over sixty years ago.
  She was considered to be a very rare case back then and there was little or no help or treatment available.
  The Doctors have learned much since and it would seem appropriate management is now the norm.
  I was a teenager then and only vaguely remember her darkened skin and eyes and her death was caused by unrelated pneumonia.
  Penicilin was largely unheard of and possibly even not yet invented.
  Don't despair.
  FJB
  

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• Message 11

  , in reply to message 10.

  Posted by PepperTree (U10855001) on Tuesday, 14th April 2009

  I'm not despairing, FJB. I don't have the skin discolouration but I do have all of the other side effects. I'm just depressed that I have been seeking medical advice for over twenty years and not once did any doctor hint that I may have this disease. In fact, I don't think that many of them had even heard of it. This widespread failure to diagnose masks a high incidence of the disease in the community, which can be fatal if left untreated, or treated too late.
  
  Because of the vagueness of some of the symptoms these are often ascribed to other conditions and as a result are sometimes regarded unsympathetically by the medical profession.

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• Message 12

  , in reply to message 11.

  Posted by Fiona (U8451206) on Tuesday, 14th April 2009

  My FIL is awaiting confirmation that he has hemochromatosis following numerous medical tests spanning a number of years. His GP only considered hemochromatosis as a possibility when my FIL pushed for these tests after another family member was diagnosed with the condition.
  
  It is still very early days for our family and so we are still learning about the condition and what to expect.

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• Message 13

  , in reply to message 12.

  Posted by PepperTree (U10855001) on Wednesday, 15th April 2009

  Thanks CaBryHar, just confirms what I thought about the diagnosis of this disease.
  
  See the Haemochromatosis Society link below, if you haven't already visited it.
  
  

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• Message 14

  , in reply to message 13.

  Posted by PepperTree (U10855001) on Thursday, 16th April 2009

  
  At the risk of being thought obsessive I just want to bump this thread.
  

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