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Genetic Haemochromatosis (GH)

Genetic Haemochromatosis (GH) is the most common inherited condition in Wales. In this disorder, iron builds up in the body and if left untreated, can lead to organ damage, joint pain and diabetes.

Treatment for Haemochromatosis

Treatment is simple and involves regularly removing around 500ml of blood (called venesection). This is divided into two different phases:

  • Induction phase
    When iron levels are very high, usually after diagnosis, blood may need to be removed as often as every week.
  • Maintenance phase
    Once iron levels have reduced to normal limits, treatment becomes less frequent. Your hospital team will decide how long you must wait between venesections.

Becoming a blood donor as a GH patient

Many people with GH can give blood with the Welsh Blood Service, provided they meet the donation criteria for giving blood. Individuals with GH who have never required venesection may also be eligible to donate.

To donate blood, you must meet the following every time you donate:

  1. The UK blood donor eligibility criteria* (click here for more).
  2. Not have complications as a result of GH, such as liver cirrhosis, cardiomyopathy, cardiac arrhythmias or insulin-dependent diabetes mellitus.
  3. Not be receiving chelation therapy.
  4. Not had an adverse reaction to venesection.

*Please note, if you are a GH patient aged between 66 and 72, a hospital venesection will also count as a blood donation.

Twins Frankie and Jax

Why donate with the Welsh Blood Service if you have GH?

Rather than being discarded, your blood can be used by patients needing a blood or blood product transfusion.

You may be able to attend a clinic closer to home and at more convenient times.

Being a blood donor will also support other patients by freeing up day care chairs in hospital clinics and the healthcare staff to treat them.

How to enrol as a blood donor if you have GH

If you meet the above criteria, please discuss with the hospital team or GP managing your Haemochromatosis. They can refer you to become a blood donor with the Welsh Blood Service. Once you have completed the Donor Agreement, and the Medical Referral Forms have been received, we will then contact you to book a blood donation.

If you have any questions, please call our team on (01443) 622 301 or email donorcarenurses@wales.nhs.uk between Monday and Friday, 9am to 5pm.

How often can I give blood if I have GH?

The Welsh Blood Service can offer venesection for those with GH as frequently as every two weeks, provided your hospital team or GP forward this information to us.

Information about ongoing care for your GH

Your hospital team or GP must monitor your condition to ensure your iron stores are acceptable. Welsh Blood Service are not able to check iron levels.

Current blood donors with GH

If you are already registered with the Welsh Blood Service as a donor with GH and wish to book your next appointment, please book here or call 0800 252 266.

For Haemochromatosis support

Website: www.haemochromatosis.org.uk/helpline
Email: helpline@huk.org.uk
Phone: 03030 401 102 (weekdays, 12pm to 3pm)