Raising global awareness of the most common genetic disorder that not enough people know about is the purposeful mission of Dr Dianne Prince, from Sydney, in stepping up this month as incoming president of Haemochromatosis International.
As president of Haemochromatosis Australia, Dr Prince is currently overseeing a social media awareness campaign of the inherited condition that affects one in 200 Australians, with the gene carried by one in seven with northern European heritage.
Dr Prince travelled to Heidelberg Germany for the Haemochromatosis International AGM on May 9. One of her first tasks in the new role will be to coordinate worldwide efforts during World Haemochromatosis Week set for June 3-9, The week will provide an opportunity to raise worldwide awareness of the condition.
Priorities of Haemochromatosis International are:
- To improve awareness of haemochromatosis throughout the world
- To enable geographical expansion of the alliance
- To share internationally recognised guidelines and best practices for treatment
“The gene is more prevalent in families of Celtic origin descended from Viking stock which are now dispersed globally. Our international alliance of volunteer organisations enables us to work together to expand knowledge and awareness about the condition,” Dr Prince said.
A genetic test for the condition was only developed in 1996 and various international groups are now working to raise awareness of the condition that leads affected people to absorb too much iron from food, overloading body tissues and damaging vital organs.
Dr Prince said recent research shows haemochromatosis causes higher levels of serious disease than previously thought and many deaths may be the consequence of undiagnosed haemochromatosis.
Haemochromatosis is often under-diagnosed, partly because its symptoms – including fatigue, depression and joint pain – are confused with a range of other illnesses.
Recent research led by the University of Exeter shows it is also has a multiplier impact on other chronic diseases by quadrupling risk of liver disease, doubling risk of arthritis and causing higher risk of diabetes and chronic pain.
These findings confirm recent Australian studies and highlight the importance of early diagnosis as well as monitoring and treatment of the condition to avoid harm and additional health complications.
Dr Prince replaces Prof Paulo Santos (Brazil) as president and follows on from past president Mr Ben Marris, (Australia). Member organisations include haemochromatosis groups from Australia, Belgium, Brazil, Canada, Europe, France, Germany, Hungary, Ireland, Italy, Norway, Portugal, Spain, United Kingdom and United States of America.
To find out more about Haemochromatosis Australia’s current Iron out your health campaign, visit the website https://haemochromatosis.org.au/ or view the awareness campaign videos https://www.youtube.com/user/HaemochromatosisAust/videos or on social media channels.