Haemochromatosis

What is it?

Genetic haemochromatosis (GH) is one of the most common genetic disorders, affecting around 1 in 200 people in the UK. It causes iron levels to build up in the blood over time, which can damage organs and joints in the body if left untreated.

The main and conventional treatment for GH involves the removal of excess iron stores by the regular removal of blood (venesection).  Despite its higher iron levels, GH patients’ blood is completely safe to transfuse.

People with GH must be referred by their Hospital Consultant/GP in order to become a donor with NIBTS, this is provided there is no evidence of organ damage and all donor eligibility criteria are met. This applies to people in maintenance as well as pre-maintenance (treatment) phase.  If accepted for donation, NIBTS will contact you (the patient) directly to arrange an appointment.

Please note all GH donors remain under the care of their referring physician, for monitoring of the condition and the determination of the frequency of venesection. NIBTS is unable to monitor iron levels or provide advice as to how often blood removal should occur.

Patient Information Leaflet

Haemochromatosis referral form

This referral form should only be completed by a Hospital Consultant/GP on behalf of a Haemochromatosis patient.