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.

You may be able to have your venesections done through the Australian Red Cross Blood Service. If you meet the normal Red Cross donor requirements, your doctor can refer you for treatment under the Red Cross therapeutic donor program. The Red Cross can use the blood they take, so you may choose to attend a Red Cross Donor Centre. Many of our members are pleased to be able to to contribute to saving a life. We even have our our Club Red group you can join. See our Links page for a link to the Red Cross website with more information.

For various reasons, not everyone can donate through the Red Cross though. Other options for venesection include

  • • Some 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.

Mi-Iron Research Project

Mi-iron is an Australian research project which aims to measure the effect of reducing moderate iron overload back to the normal range in people with haemochromatosis.

The project is looking for volunteers to take part in this important research. Haemochromatosis Australia endorses the research and has agreed to help recruit volunteers.

The research is being conducted in Brisbane, Melbourne and Perth.

To take part in this study, a person needs to meet the following criteria:

  • • Diagnosed with haemochromatosis due to having two copies of the same HFE gene fault called C282Y.
  • • Aged 18 – 70 years.
  • • Have moderate iron overload (serum ferritin between 300ug/L – 1000ug/L.
  • • Have no other major diseases or risk factors such as liver disease, excess alcohol consumption, body mass index (BMI) >35.
  • • Has not received venesection therapy for haemochromatosis in the last two years.

If you are interested in volunteering or would like to know more about the project, visit the Mi-Iron website here.

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.

 

What next?

Read about Haemochromatosis Australia – your volunteer support group here.

Would you like to join Haemochromatosis Australia or make a donation to help us carry on our work supporting people diagnosed with haemochromatosis?

We are run entirely by volunteers and rely on member’s subscriptions and donations to operate

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