Information for The Media


Background

The Haemochromatosis Society is a patient organisation and support organisation. It was set up in order to help people who are affected by genetic haemochromatosis (GH). GH is also sometimes referred to as HH (Hereditary haemochromatosis).

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GH is a condition which leads to the accumulation of iron in the organs of the body. At high concentrations, iron is very toxic. Iron overload leads to many symptoms including major organ damage and failure.

Sadly, GH is often not diagnosed in time to prevent this accumulation of iron and damage. Medical professionals endeavour to treat the individual symptoms, or ascribe them to other causes. People with more than one of the common symptoms of GH should be asked to go for a simple blood test.

Once diagnosed, treatment is relatively simple and consists of venesection (phlebotomy, blood letting). As the body makes more blood to replace that taken, it uses up the excess stored iron.

Comment and expertise

The charity will provide informed comment and information if you are writing a story which features haemochromatosis or iron overload.

We can source case studies of patients, families, and those bereaved by haemochromatosis and link the subjects with writers and producers once permission has been given. The charity will also link writers with recognised medical and scientific experts for comment or more in-depth interviews.

Please email office@haemochromatosis.org.uk or call 03030 401101 with some information about what you need and we will do our best to assist. Raising awareness of GH amongst the public is a high priority. Early diagnosis saves lives and costs the NHS very little.

10 facts you can quote

The gene flaws that can cause genetic haemochromatosis are believed to be carried by as many as 1 in 8 people of northern European descent.

Symptoms of iron overload can mimic those of iron deficiency (chronic fatigue), leading to non diagnosis or, even worse, the prescription of iron supplements!

GH is sometimes called The Celtic Curse, because of the fact that it is more prevalent in the Celtic countries. The gene flaws can be traced back to the Vikings.

The Haemochromatosis Society is one of several such organisations around the world.

Weekly venesection of a pint of blood can restore iron levels in a patient to normal, though will not reverse organ damage to the liver or heart, or alleviate all other symptoms.

Impotence, loss of libido, early menopause, arthritis, depression, fatigue, hair loss, skin discolouration, mood swings and other symptoms can all be caused by iron overload.

Haemochromatosis is a systemic problem, it affects a number of the body’s systems – hormone production, liver function, brain function, joints, and more.

The cost of a blood test to detect iron overload at an early stage is in the order of a few pounds at most. The costs to the NHS of a liver transplant arising as a result of non-diagnosis might be £50,000. (source: http://www.dailymail.co.uk/health/article-86520/A-consultant-liver-transplant-surgeon-explains-procedure.html)

GH causes cirrhosis of the liver and liver cancer; we hear of patients being dismissed as ‘silent’ drinkers and GH not considered as a possibility by some consultants.

GH patients are sometimes not diagnosed early because the condition doesn’t fall clearly into the remit of one consultant specialism. Gastroenterologists, endocrinologists, cardiologists, haematologists, rheumatologists, and others may all focus on the symptoms relating to their specialism and not always consider the broader systemic picture.

Fact number 11

Early diagnosis saves lives.

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