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.

Simply click the button and ask a question!

Frequently Asked Questions

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

Latest

#TeamIronOverload at the Best Practice Show

#TeamIronOverload attend the tenth annual Best Practice show in Birmingham to share knowledge and raise awareness in the medical community.
40% rise in membership

Look out for the members’ survey before Christmas help us shape our services.
British Society for Rheumatology Annual Conference 2022

The UK’s leading rheumatology event will be back in Glasgow April 2022 year for a three-day hybrid conference of cutting-edge research, best in the field speakers, posters, symposia, and much more.
Genetic Testing for Haemochromatosis in Ireland

Our genetic testing service for haemochromatosis, at a glance. Order a home-testing kit by post, get the results within 4 weeks.

What will be your legacy?

It's Free Wills Month for members and Friends Against Iron Overload. Start your will and save over £90!
Genetic Testing for Haemochromatosis

Our genetic testing service for haemochromatosis, at a glance. Order a home-testing kit by post, get the results within 2 weeks.
HUK Win Nurse of Year Award for Venesection Best Practice

HUK's venesection best practice team have won Nurse of the Year in the prestigious British Journal of Nursing Awards.
Kidszone launches this month

Our new Kidszone launches this month with new resources for children and young people affected by genetic haemochromatosis.
BBC Radio 4 Charity Appeal in Aid of Haemochromatosis UK

Join Stephen McGann for this BBC Radio 4 Charity Appeal in aid of Haemochromatosis UK. Broadcast on BBC Radio 4 from Sunday 7th February 2021.
Time For Change - Towards Genetic Screening

This 22-page report was commissioned in response to the UK National Screening Committee consultation on genetic screening for GH in adults. Published February 2021.
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.

CV19 Vaccine & Haemochromatosis

Advice and information on the new Covid-19 vaccines for people affected by genetic haemochromatosis. Updated 14th June 2021.
What is genetic haemochromatosis?

Genetic haemochromatosis (GH) is a genetic disorder causing the body to absorb an excessive amount of iron from the diet.
Genetic Testing for Haemochromatosis

Our genetic testing service for haemochromatosis, at a glance. Order a home-testing kit by post, get the results within 2 weeks.
Employers' guide to haemochromatosis

People with genetic haemochromatosis want to play an active role in society. These guidelines are intended to help employers understand how they can help people with genetic haemochromatosis in the workplace.
Coronavirus Update

Our helpline has received an increased number of queries about coronavirus. We've collated the current advice here. Updated 28th July 2021.
Treatment & care
Clinical Guidelines for Genetic Haemochromatosis

Our charity endorses the national clinical guidelines published by the British Society for Haematology in April 2018, for the treatment of people with genetic haemochromatosis. We strongly encourage patients to ensure that their consultants and venesection teams work to the BSH April 2018 guidelines.
Join us

Together, we are stronger. Join today as a member and receive the many benefits of membership of the UK's only charity for people affected by genetic haemochromatosis.
Genetics of haemochromatosis

Genetic haemochromatosis is an autosomal recessive condition, meaning that it is inherited. Whether someone inherits the condition, depends upon their parents' genetics.
Living well with GH

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