In His Own Words

Thursday, 21 April 2011

Be inspired, get involved in Treatment for All!

On World Haemophilia Day, Peter Fogarty from Brisbane, Australia, tells the story of discovering that his two young sons, Felix and Clancy, have haemophilia and Felix’s journey growing up with severe haemophilia A – his brave and determined path from having treatment through a port to learning to treat himself, with a smile.

Click on the link to watch the video of the Fogarty family story:
http://www.youtube.com/watch?v=gBr_DkPlgqk
Thanks to Channel 10, Brisbane, for permission to provide access to this video.

When Felix was 5 months old his parents discovered two giant bruises on his chest under where the buckles of his overalls would have been. However, when they found more unexplained bruises they knew something was not right. After a series of traumatic blood tests on their baby it was finally confirmed that little Felix actually had the incurable condition – haemophilia. From that point on their family’s life changed forever. For the rest of Felix’s life he will need to be treated 2-3 times a week to prevent bleeding episodes that could threaten his life.

Stories just like this one, describing the struggles and successes of a person with a bleeding disorder, were shared around the world on World Haemophilia Day, April 17. During April 2011, people with haemophilia and other inherited bleeding disorders are sharing their stories on the World Federation of Hemophilia (WFH) website www.wfh.org/whd . This is an important part of the WFH campaign for Treatment For All.

“Haemophilia is a bleeding disorder where your blood lacks an essential protein to allow it to clot normally,” said Gavin Finkelstein, President, Haemophilia Foundation Australia. “About 40 years ago haemophilia treatment didn’t exist. Most people with haemophilia at this time were not expected to live into adulthood,” said Mr Finkelstein.

“Today, someone born with haemophilia can lead a relatively normal life if they have access to proper treatment. While treatment is available to people living with haemophilia and other bleeding disorders in Australia, access to treatment is perhaps the biggest challenge facing many people with bleeding disorders throughout the world who still do not have adequate treatment,” said Mr Finkelstein

“On World Haemophilia Day we want to inspire people to learn about haemophilia, von Willebrand disorder and other bleeding disorders and get involved in improving access and quality of care so that around the world Treatment for All becomes a reality. The WFH vision is that one day treatment for all people with bleeding disorders will be available,” said Sharon Caris, Executive Director, Haemophilia Foundation Australia.

To learn more about what it is like to live with haemophilia, von Willebrand disorder and other rare inherited bleeding disorders, visit www.wfh.org/whd 

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