Learning to live with haemophilia: HFNZ host childrens workshop to mark World Haemophilia Day
An estimated 1 in 1,000 women and men has a bleeding disorder worldwide. Every year on 17 April, World Haemophilia Day is celebrated around the world in order to increase awareness of haemophilia and other inherited disorders. This World Haemophilia Day the Haemophilia Foundation of New Zealand (HFNZ) is holding a national Childrens Education Workshop for children with severe bleeding disorders.
Having a rare medical condition can feel very isolating. Within the community of families living and dealing with haemophilia, there is a tradition of sharing information and support for each other, says Belinda Burnett, HFNZ Chief Executive. On World Haemophilia Day we want to help children with haemophilia understand their condition and learn to successfully live with it.
Haemophilia is a bleeding disorder where a person is missing an essential protein in their blood. Without enough of this protein they are unable to stop bleeding. Usually hereditary, haemophilia is a rare disorder usually diagnosed in infancy and requires lifelong treatment. There are approximately 420 people with haemophilia in New Zealand.
The theme for the Childrens Workshop held at Aucklands Orakei Basin is Paddle your own waka. The children, all between 6 and 10 years old, had the chance to go kayaking with adventurer Jack Finn, who also has haemophilia , learn skills to help them take charge of their condition, plus have a really great day out with other children who share the challenges of growing up with a bleeding disorder.
With support, education and treatment people with haemophilia can live nearly active lives. HFNZ are committed to improving the quality of life of patients with haemophilia.
In New Zealand we are lucky to have access to world-class medical care for bleeding disorders but the reality is that most people with haemophilia in the world do not receive adequate diagnosis, treatment, and management for their conditions, says Burnett. Raising awareness is important even when good treatment is already established as we want to ensure that the level of care is protected and continues to improve.
About the Haemophilia Foundation of New Zealand (HFNZ):
HFNZ is a charitable organisation dedicated to improving the lives of all people with haemophilia, von Willebrands disorder and related disorders and their families/whanau. Established in 1958, they provide support and education to people with bleeding disorders and their families in New Zealand. For more information on HFNZ and haemophilia visit www.haemophilia.org.nz