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Be inspired; get involved in Treatment for All
Discover the struggles and successes of a person with a bleeding disorder on 17 April by raising awareness about World Haemophilia Day and encouraging South Africans with Haemophilia and other inherited bleeding disorders to participate in a global event by sharing their stories on the World Federation of Hemophilia (WFH) website.Learn what challenges face people from different countries and be inspired by their stories. Join together with the international community to raise public awareness to improve the quality of care and accessibility for people with bleeding disorders.
“Haemophilia is a bleeding disorder where your blood lacks an essential protein to allow it to clot normally,” said Mark Skinner, WFH president. “When I was born withhaemophilia, treatment didn’t exist. My parents were told that it was doubtful that I would live into adulthood.”
Live normally
“Today, someone born with haemophilia can lead a relatively normal life if they have access to proper treatment. Access to treatment is perhaps the biggest challenge facing the majority of people with haemophilia throughout the world. Only 25 per cent of those living with haemophilia are receiving adequate care. The WFH’s vision is that one day treatment for all people with bleeding disorders will be available.”
For World Haemophilia Day 2011, Novo Nordisk, through their Changing Possibilities in Haemophilia campaign joins this global effort to bring a strong call to action to address the significant need for improving haemophilia care in the developing world where the disease is currently not a healthcare priority. The Novo Nordisk Changing Possibilities in Haemophilia campaign’s main objective is to improve treatment options, provide better access to care and follow up on their commitment to understanding the needs of people with haemophilia and cooperating with partners to advance the haemophilia cause.
The statistics
In South Africa 1 in 5000 boys are born with Haemophilia – but regrettably a vast number of patients who have Haemophilia or other bleeding disorders remain undiagnosed – or are diagnosed at very late stage. Of those that are diagnosed, many remain without adequate care.
“On World Haemophilia Day we want to inspire people to learn about bleeding disorders and get involved in improving accessibility and quality of care in South Africa - so that around the world Treatment for All becomes a reality,” says Professor Johnny Mahlangu, Director of Heamophilia Comprehensive Care Centre: Charlotte Maxeke JHB Academic Hospital.
To learn more about Heamophilia and what it is like to live with a bleeding disorder, visit www.novonordisk.co.za and click on Haemophilia and Bleeding Disorders or access the South African Haemophilia Foundation’s website on www.haemophilia.org.za or visit the World Federation of Haemophilia’s website: www.wfh.org
About Haemophilia and other bleeding disorders
Haemophilia, von Willebrand disease, and other factor deficiencies are lifelong bleeding disorders that prevent blood from clotting properly. People with bleeding disorders do not have enough of a particular clotting factor, a protein in blood that controls bleeding, or else it does not work properly. The severity of a person’s bleeding disorder usually depends on the amount of clotting factor that is missing or not functioning. People with haemophilia can experience uncontrolled internal bleeding that can result from a seemingly minor injury. Bleeding into joints and muscles causes severe pain and disability while bleeding into major organs, such as the brain, can cause death.
About the South African Haemophilia Foundation: as a member of the World Federation of Haemophilia, the foundation is comprised of seven voluntary committees for the Western Cape, Eastern Cape, KwaZulu Natal, Free State, North and Central Regions. The Foundation has as its mission the following objectives: to provide a fellowship for persons with Haemophilia and similar conditions, for their families and those concerned in their health and welfare; to promote the interests of persons with Haemophilia and similar conditions; to, where possible and within the means of the Foundation, financially assist persons with Haemophilia and similar conditions needing such assistance; to strive to facilitate adequate treatment facilities and access to safe products for the treatment of Haemophilia at the best financial dispensation possible; to render its services in the Republic of South Africa. Visit online at www.haemophilia.org.za
About the Changing Possibilities in Haemophilia Campaign.
Initiated and funded by Novo Nordisk, Changing Possibilities in Haemophilia® aims to address the significant need for improving haemophilia care in the developing world where the disease is currently not a healthcare priority. The Changing Possibilities in Haemophilia® Campaign’s objective is focussed on improving treatment options, providing better access to care and following up on Novo Nordisk’s commitment to understanding the needs of people with haemophilia and cooperating with partners to advance the haemophilia cause. Visit online at www.novonordisk.co.za
About the World Federation of Haemophilia (WFH)
The World Federation of Haemophilia is an international not-for-profit organization dedicated to improving the lives of people with Haemophilia and other inherited bleeding disorders. Established in 1963, it is a global network of patient organizations in 118 countries and has official recognition from the World Health Organization. Visit WFH online at www.wfh.org. (Health24, April 2011)
