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

Scotland's Kiltwalk 2021 Glasgow

The Kiltwalk attracts people of all fitness levels, backgrounds and for a real variety of reasons. Walk for Haemochromatosis UK.
Your NHS Rights

Everyone deserves great NHS care. But if something goes wrong or isn’t working for you, what can you do?
London Marathon 2021 for Haemochromatosis UK

I am unbelievably excited to be running the London Marathon in October 2021 to help raise funds for Haemochromatosis UK. This will be my first marathon, and I am very grateful to Haemochromatosis UK for agreeing to let me run for the charity raising money and awareness of this condition.
Act now to decide who gets access to your medical records

A new scheme starts in September which requires all GPs in England to share patient medical records with NHS Digital. The deadline for opting out is 31st August.

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.
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.

What is genetic haemochromatosis?

Genetic haemochromatosis (GH) is a genetic disorder causing the body to absorb an excessive amount of iron from the diet.
CV19 Vaccine & Haemochromatosis

Advice and information on the new Covid-19 vaccines for people affected by genetic haemochromatosis. Updated 14th June 2021.
Common symptoms
Coronavirus Update

Our helpline has received an increased number of queries about coronavirus. We've collated the current advice here. Updated 28th July 2021.
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.
Treatment & care
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.
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.
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.
Living well with GH

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