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0300 77 77 007 enquiries@healthwatchliverpool.co.uk

Raising awareness of Genetic Haemochromatosis


Genetic Haemochromatosis is an Iron Overload condition in which the body absorbs more iron than is needed and is unable to process the excess. The iron builds up over time and is deposited in vital organs such as the liver, heart, pancreas and joints causing damage and various related conditions. It is one of the most common yet under diagnosed genetic conditions in Britain. This can result in conditions such as fatigue, arthritis, diabetes, liver problems, bronzed skin, abdominal pain and heart irregularities.

Paul is a Liverpool resident who wanted to share his story to make people more aware of how Haemochromatosis can present and how it can be treated:

"What seems like an eternity back in 2004 I finally saw my GP, Dr. Smith (pseudonym) after months and months of feeling completely exhausted.

Our son was born in 1999 and gave us 2 torrid years of sleep deprivation (like many other people), however, his sleep was getting better but I was still nodding off at work and going to bed before him.

A blood test to check my iron levels showed my ferritin was around 5500 (normal range is 15 – 400) and I was referred to a Haematologist. It was then I was diagnosed with Genetic Haemochromatosis.

The treatment (venesection or bloodletting) was intensive to say the least. I am extremely lucky that I am not needle-phobic so I coped with nearly 18 months of giving a pint of blood every week. I had a great boss at work given her Dad had the condition, and on I plodded, developing a Mantra, "Out with the bad, in with the good..." I know that's nonsense as iron doesn't come out with the blood but as I began to skip, not plod, post venesection it kept me more than sane.

Mood swings, which are a symptom of the condition, still affect me and nowadays I generally fluctuate between monthly and quarterly venesections, but I have had many years in and out of maintenance when my iron levels have been at a safe level.

As chronic conditions go I've had a good roll of the dice as I have been diagnosed, treated and well looked after in the system as well as having the help and support of this super network, The Haemochromatosis Society".

For further advice or information you can contact:

The Haemochromatosis Society
Office: 03030 401 101
Advice line: 03030 401 102

For local support see: http://northwest.haemochromatosis.org.uk/

Follow them on Twitter or join their Facebook Group


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