By Ellen Palmer Hubble
PICTURED with Hector, the family goat, is my daughter Tessa who has played banjo with the Chestnut Street Orchestra, one of the featured bands for Tick the Box, a concert and community contra dance at the Wonthaggi Town Hall on Saturday, August 27.
Tessa has a gene for Haemochromatosis (pronounced hee-mo-kro-ma-toe-sis), an inherited iron overload disorder also known as bronze diabetes. Undetected iron overload happens over time, so all can appear well until it affects joints and organs including the heart and liver.
PICTURED with Hector, the family goat, is my daughter Tessa who has played banjo with the Chestnut Street Orchestra, one of the featured bands for Tick the Box, a concert and community contra dance at the Wonthaggi Town Hall on Saturday, August 27.
Tessa has a gene for Haemochromatosis (pronounced hee-mo-kro-ma-toe-sis), an inherited iron overload disorder also known as bronze diabetes. Undetected iron overload happens over time, so all can appear well until it affects joints and organs including the heart and liver.
Tessa’s grandfather, my father, died from liver cancer as a result of this disorder which was relatively unknown and underdiagnosed in the 1980s. Although still often unheard of and underdiagnosed today, it is not an uncommon disorder.
I inherited the gene from my father’s side and passed it on to our daughter, Tessa, 24, and our son Tom, 26. We have since discovered that my husband David, Tom’s and Tessa’s father, also has Haemochromatosis . His gene test revealed that both his parents were carriers. Consequently David has passed a gene from his heritage to our children too.
Due to our awareness of Haemochromatosis within the family and the knowledge and experience of our GP, we are fortunate to be able to have early detection, monitoring and treatment of symptoms arising from the iron overload.
Tessa carries a gene but as yet has shown no symptoms, Tom has had some high iron levels which have been reduced by the simple form of giving blood, known as venesection. He is closely monitored under the direction of a specialist. David being at a more vulnerable age of 63, has had many more years to store iron so he has had more frequent monitoring and venesections, also under the direction of his specialist.
Our family enjoy a normal life. I am an active member of the Wonthaggi community. I am also a volunteer member of Haemaochromatosis Australia. During the past few years I have had conversations with people who have discovered it in their family or have a friend who has the disorder.
The common ingredient from stories and conversations is that “People just don’t know and they don’t know early enough”. The hope is that through awareness and early diagnosis this disorder can be treated and complications prevented.
My aim is to increase awareness of Haemochromatosis. Last year I completed an Archibald portrait entry of Australian photographer Andrew Chapman who had a liver transplant as a result of Haemochromatosis.
This year, I wanted to pitch the awareness campaign out to Bass Coast and the South Gippsland rural communities. “Tick the Box” is a metaphor to encourage people to discuss with their doctor any concerns they might have about possible symptoms. The doctor might then “tick the box” for an iron level blood test referral.
To support our not-for-profit awareness campaign we hope to inspire families and their friends to attend Tick the Box, a fun evening of live music with two bluegrass bands: the Bass Coast Pickers and the Hill Williams, as well as an old time contra dance band, Maggie Duncan and The Chestnut Street Orchestra. Sit back and enjoy the music or join in the dancing.
Members of the bands will wear something red, symbolic of Haemochromatosis. Hector the goat won’t be at the dance but he will be sporting his red jacket during Haemochromatosis Awareness week, from August 8-14.
For more information about Haemochromatosis, contact your GP or Haemochromatosis Australia on 1300 019 0238 or www.haemochromatosis.org.au
I inherited the gene from my father’s side and passed it on to our daughter, Tessa, 24, and our son Tom, 26. We have since discovered that my husband David, Tom’s and Tessa’s father, also has Haemochromatosis . His gene test revealed that both his parents were carriers. Consequently David has passed a gene from his heritage to our children too.
Due to our awareness of Haemochromatosis within the family and the knowledge and experience of our GP, we are fortunate to be able to have early detection, monitoring and treatment of symptoms arising from the iron overload.
Tessa carries a gene but as yet has shown no symptoms, Tom has had some high iron levels which have been reduced by the simple form of giving blood, known as venesection. He is closely monitored under the direction of a specialist. David being at a more vulnerable age of 63, has had many more years to store iron so he has had more frequent monitoring and venesections, also under the direction of his specialist.
Our family enjoy a normal life. I am an active member of the Wonthaggi community. I am also a volunteer member of Haemaochromatosis Australia. During the past few years I have had conversations with people who have discovered it in their family or have a friend who has the disorder.
The common ingredient from stories and conversations is that “People just don’t know and they don’t know early enough”. The hope is that through awareness and early diagnosis this disorder can be treated and complications prevented.
My aim is to increase awareness of Haemochromatosis. Last year I completed an Archibald portrait entry of Australian photographer Andrew Chapman who had a liver transplant as a result of Haemochromatosis.
This year, I wanted to pitch the awareness campaign out to Bass Coast and the South Gippsland rural communities. “Tick the Box” is a metaphor to encourage people to discuss with their doctor any concerns they might have about possible symptoms. The doctor might then “tick the box” for an iron level blood test referral.
To support our not-for-profit awareness campaign we hope to inspire families and their friends to attend Tick the Box, a fun evening of live music with two bluegrass bands: the Bass Coast Pickers and the Hill Williams, as well as an old time contra dance band, Maggie Duncan and The Chestnut Street Orchestra. Sit back and enjoy the music or join in the dancing.
Members of the bands will wear something red, symbolic of Haemochromatosis. Hector the goat won’t be at the dance but he will be sporting his red jacket during Haemochromatosis Awareness week, from August 8-14.
For more information about Haemochromatosis, contact your GP or Haemochromatosis Australia on 1300 019 0238 or www.haemochromatosis.org.au