Frequently Asked Questions About Genetic Haemochromatosis

We have collated many of the frequently asked questions about genetic haemochromatosis with answers here, for ease of reference.

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Frequently Asked Questions

If you have a question that hasn't already been answered, contact one of our helplines.

Latest

Liver cancer ten times more likely in men with GH

Men who have the Western world’s most common genetic disorder, haemochromatosis, are ten times more likely to develop liver cancer, according to a major new study.
The Big Give 2020

The Christmas Challenge. One donation, twice the impact. The Big Give runs the UK’s biggest match funding campaign, The Christmas Challenge. For seven days, it offers supporters of Haemochromatosis UK the opportunity to have their donation doubled.
Improvements to GH Donor Arrangements

We work closely with NHS blood donation services across the UK, to improve the opportunities for people with genetic haemochromatosis (GH) to become blood donors. Learn about some forthcoming changes to these schemes in England and Scotland.
That'll be The Day Christmas Show

That’ll Be The Day’s Rock & Roll Christmas show has been running for over thirty years. Thanks to the Independent Age Foundation, we are very excited to offer you the chance to see the brand new Christmas show in the comfort of your own home!

Liver cancer ten times more likely in men with GH

Men who have the Western world’s most common genetic disorder, haemochromatosis, are ten times more likely to develop liver cancer, according to a major new study.
State of the Nation Report reveals inconsistent NHS care

Over the past 12 months, we have been researching NHS care pathways for people with genetic haemochromatsosis. Help us as we press for urgent change to improve NHS care.
New Genetic Haemochromatosis Resources

We're pleased to announce the publication of three new resources, to help people affected by genetic haemochromatosis.
In memory of Lindsay Forsyth

Lindsay was officially diagnosed with Haemochromatosis about 3 years ago, which for people unfamiliar with the genetic condition, is excessively high blood iron levels. Lindsay would attend hospital every two weeks to have some blood removed and this helped to bring down her iron levels over time (though by the time she passed away they were still really high).

Unfortunately high blood iron levels are a big risk factor for other complications, most notably liver disease.
Genetic counselling service launched

Our free genetic counselling service for members has launched.
Coronavirus Update

Our helpline has received an increased number of queries about coronavirus. We've collated the current advice here.
Great North Run half marathon for Dad

In memory of Dad who sadly passed away aged 58 just before Christmas 2019 with liver cancer caused by Haemochromatosis.
Best practice nursing care for GH

A day-long training workshop for nurses and other healthcare practitioners caring for people with genetic haemochromatosis.
Local social & support groups

Our local socials provide a chance to meet other people affected by genetic haemochromatosis, provide encouragement, share experiences & laughter.
Living well with GH

Changes to your diet cannot prevent iron overload. Check out our guide to healthy eating.