Can anyone advise me on how to obtain a genetic test for haemochromatosis? (My mum, 3 uncles, garndfather and 2 cousins have the condition).My GP was absolutely clueless on how to go about testing.

Thanks,

Linda

I seem to be suffering a lot lately with upper back pain.I have the usual symptons of haemochromatosis,pain in hands,wrists,knees etc..have been to see my GP who cant really give me an answer,as she dosent think it is my kidneys or muscular.Does anyone else have this problem?

Hi, I live in Glasgow, here in Scotland we are just getting our own group off the ground and the forum has not been set up yet. Meanwhile, I have been diagnosed with haemochromatosis. I will begin venesection in a few weeks and thanks to the society I am clued up, but finding it hard to manage the pain and to be honest its shocking how little the doctor at my local hospital knows.I know my levels are high and I know I and exhausted and sore but I dont know what, if any, damage has been done and the docs dont seem to be checking me in that way. Is this normal?

Rosie

I have been in maintenance now for the best part of a year and generally feel well but have been getting increased pain in my wrists, elbows and mostly shoulders. Pain relief doesn't touch it. Has anyone had similar and more importantly any advice for treatment/physio/drugs? I am only 46 and up until the last few years have been very active.

I have recently been diagnosed with Haemochromatosis after my mother got me to have the tests. 2 of my other brothers and sisters also have the condition. The trouble I have is getting time to receive regular treatment. I travel every week monday to friday and have tried to get my consultant at Leighton Hospital, Crewe to find me an alternate time to go for venesection, but he has come up with nothing. I tried enrolling as a blood donor, but they will not treat the condition, just maintain it after treatment.
I am at a loss to understand why in this day and age I can't get treatment out of hours or in other locations within the UK. If anyone has any advice it would be greatly appreciated.

I was diagonosed with genetic Haemochromatosis in early 2006.I have 3 children and the 2 older ones have it to.We have all been having treatment etc.My oldest son went to see his consultant today for checkup.his iron levels had risen again and he goes next week for venesection.He was then told he would not need to come for another 3 months after he has that done.A week before he does go back to see the consultant he will have blood tests taken.There is one test on the form which i have never seen before.it is called ALPHA FETO PROTEIN.Could anybody tell me what this one is please?

It is with great sadness that I inform you that my dear Dad, Frederick James Jones, peacefully passed away on friday the 11th of July surrounded by his family just as he had wished for. As Dad was only diagnosed in February of this year it was far too late to save him and the damage to his liver and kidneys was irretrievable. The weekly draining of fluid would never be a cure although it did give him some relief at the end. I urge you to spread the word of this dormant potentailly fatal disease, whither it be asking your GP to be more vigilant in their practice or advising a family member or friend to be tested. Hopefully this will ensure at least one less person being another premature unnecessary death.
Once again, to anyoue affected by Haemochromatosis and their families, do take care.
Amanda
x

Hi - I am a haemochromatosis sufferer with absolutely no symptoms. I got diagnosed after routine checks and I am trying to get phlebotomy treatment fortnightly. I do a lot of sport and consequently my heart rate and blood pressure are quite low. To further comlicate things, over the course of the last few months, my haemoglobin levels have dropped - I have had 10 phlebotomy treatments over 6 months (haemoglobin around 12.7 right now). As a result, medical personnel are not keen to perform phlebotomy treatment - is there any way around this? I am 47.

Hi everyone Val in particular...........

I was pleased to read your entry as my family and I are having a hard time at the moment with the NHS looking after Dad's needs.
The daily nurses from his practice are second to none but the level of care at our local NHS hospital is shocking.
My Dad needs to have his stomach drained every week now as he needs a liver transplant, but at 71yrs young will not be put on the list.
We are all exausted as he now needs 24hr care and in Feb he refused any more treatment and came home to die. Luckily we managed to change his mind and he agreed to be a out-patient only.
The joys, times are hard, but I would not be without him.
Take care everyone.
Amanda

Hi everyone...my Dad has only recently been diagnosed with this condition. My Dad has suffered nearly 30 years of pain and anguish and now his liver and kidneys are very damaged indeed. My brother and I are still waiting to receive our test results and I personally had to argue my case with my GP to have the test done, as it would cost so much!
My Dad is in a sorry state, and we are digusted that all the previous doctors did not pick this up sooner as he was diagnosed with osteoarthritis in his early 40's, diabetes in his early 50's and his health has deteriorated at an alarming rate, it is a miracle he is still with us. I will do my utmost to help this society in any way that I can and will hopefully find out soon if it has been passed on to my brother or I.
To anyone affected by Haemochromatosis and their families, God bless you all and keep you safe.
Mand