How is haemochromatosis treated?
Treatment consists of the removal of blood by venesection (similar to donating blood). This is also sometimes called phlebotomy. Up to 500mL of blood is removed at regular intervals until the iron levels in the blood return to within the normal range.
This can take up to 18 months with weekly or sometimes twice weekly venesections, depending on the original iron levels of the patient.
Once normal levels of iron are re-established, venesections are used less frequently (three or four times a year) to maintain those levels throughout the patient’s lifetime.
At what level should treatment begin?
At any level above normal – the iron levels should be normalised as quickly as possible. Permanent damage, such as cirrhosis, occurs with iron overload and is irreversible. Your doctor will set up a treatment schedule for you.
Where can I have my venesections done?
Talk to your doctor about the options in your area.
Australian Red Cross Blood Service
The Australian Red Cross Blood Service (the Blood Service) has a therapeutic venesection program for individuals who have iron overload as a result of hereditary haemochromatosis.
Many people with haemochromatosis can attend the Blood Service for venesection and the Blood Service is able to use your donation to help save lives. If you are not eligible to donate blood which can be used to treat patients because of medical or lifestyle considerations, the Blood Service may be able to offer a therapeutic venesection service.
To be accepted as a therapeutic donor, you will need an online referral from your doctor using the High Ferritin App.
Many of our members are pleased to be able to contribute to saving a life. We even have our own Red25 group you can join (just search for ‘Haemochromatosis Australia’ and pick the group for your state). Red25 is a life-saving social responsibility program where workplaces, community groups, and universities around Australia unite to save lives through blood donation. Your friends and family may come along to support you and donate at the same time. They can join our Club25 groups too. From time to time we will have state by state challenges to ecourage our supporters to join in.
Other Options for Venesections
For various reasons, not everyone can donate through the Red Cross or do not have access to nearby donor centre. Other options for venesection include
• Many hospitals have regular venesection clinics
• Some GPs will perform venesections in their surgery
• Some pathology companies will perform venesections. It is usually best to ring and enquire first as not all collection centres provide this service.
If you are having trouble locating somewhere to have venesections, ring our INFO LINE 1300 019 028. We may be able to suggest somewhere.
Watch this Video
This video runs for 10 minutes. It contains some of the information already covered on previous pages. It also contains interviews with people living with haemochromatosis.
Would you like to join Haemochromatosis Australia or make a donation to help us carry on our work supporting people diagnosed with haemochromatosis?
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Reviewed & Updated 12 July 2018.