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

376km! Now that’s a cycle!

Cycling the distance of Alloway, Ayr to Old Trafford in memory of a loved one, to raise awareness of this condition.
Our New Genetic Testing Service for Members' Families

Announcing our new genetic testing service for HUK members and their families. Order a home-testing kit by post, get the results within 2 weeks.
Genetic Testing for Haemochromatosis

Our genetic testing service for haemochromatosis, at a glance.
New GH eLearning Module for Nurses

Flushed with success after winning the prestigious Nurse of the Year Award in March, our team have been working on a new eLearning module for nurses and healthcare practitioners.

Our New Genetic Testing Service for Members' Families

Announcing our new genetic testing service for HUK members and their families. Order a home-testing kit by post, get the results within 2 weeks.
Skydive for Team HUK

I am fulfilling a dream come true by jumping out of a plane to raise awareness of Haemochromatosis! I am HUK's Office Administrator and wanted to do something different to raise money for the charity. The more money I raise - the higher I jump!!
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.