Update: Jessica will hold her second focus group on Tuesday 30 September at at Aitkenvale library from 7pm. Please contact Jessica if you would like to attend. Jessica Pearce, James Cook University Jessica.Pearce1@my.jcu.edu.au, or telephone (07) 4781 4474
Jessica Pearce, a fifth year medical student at James Cook University, Townsville is conducting an honours project focusing on hereditary haemochromatosis. Her project is entitled “Factors affecting self-management of hereditary haemochromatosis: an exploratory study”. While doing clinic experience Jessica noted that numbers of local people were being diagnosed with haemochromatosis, but there was a lot missing in the education and management of patients. Jessica also had personal contact with the disorder when a friend was diagnosed with the genetic condition, increasing her interest in the management of haemochromatosis.
Jessica searched further afield and found that there was a local Haemochromatosis Australia Regional Support Group. This group is very willing to provide support and assistance for the study. The national support and advocacy group Haemochromatosis Australia have also got behind the study. The research will be very valuable to those who are struggling with haemochromatosis.
Jessica needs support from local people with confirmed hereditary haemochromatosis to join focus groups as part of the first component of her study. It will investigate how each of those diagnosed with the disorder manage living with Haemochromatosis, whether any changes have been made to their lifestyle, diet modifications and how often they have blood taken to reduce their iron overload. Out of the information provided by those local focus groups, an online survey will be developed to extend the study nationally.
Ben Marris, President of the not-for profit support group Haemochromatosis Australia says “Haemochromatosis is a common condition which has often been overlooked. Most people know that too little iron in your body can cause a problem. It is less well known that iron overload can be a serious problem. It is easy to find and simple to treat. We welcome Jessica’s study which will help us to better understand the management of this condition.”
Townsville general practices affiliated with the North Queensland Practice Based Research Network (NQPBRN) will also be providing support for the study through the distribution of information packages to patients with haemochromatosis.
Hereditary haemochromatosis is a genetic metabolic iron disorder which allows the absorption of too much iron into the organs, joints, muscles, etc. causing extreme fatigue, body muscle and joint pain, arthritis often resulting in hip and knee replacements, diabetes, libido and fertility problems, heart disorders, liver disease, and ultimately death unless it is diagnosed early and appropriately treated. Treatment involves taking of about 450-500 ml of blood (venesections) at a frequency appropriate for the level of iron that has been absorbed. This treatment gradually depletes the body of excess absorbed iron, and usually continues for the rest of the patient’s life at a maintenance level. Those with Northern and Western European and the British Isles heritage are more likely to inherit the genes that cause this disorder. It is the most common genetic disorder in Australia with one in 200 people with two copies of the HFE gene which means they are at risk of developing haemochromatosis, and one in seven with one HFE gene which means they are a carrier and can pass the gene on to their children, but won’t generally suffer symptoms. If you think it is in your family or you have some of the symptoms, ask your doctor for an Iron Studies test.
Sheryl Brannan, Volunteer Coordinator of the Townsville Support Group, said “There is not enough support out there for people with Haemochromatosis, so studies like this one will help bring attention to their needs, including a further understanding among family and work colleagues. It’s great that it is happening here in Townsville! If you have confirmed hereditary haemochromatosis and would like to assist Jessica, please contact her via email Jessica.Pearce1@my.jcu.edu.au, or telephone (07) 4781 4474 and ask for an information package to be posted to you.
To contact the Townsville Regional Haemochromatosis Support Group, telephone (07) 4725 3973 or email Sheryl at Tom.Brannan@bigpond.com.