On the 17th April, 2017 World Haemophilia Day will be celebrated across the globe by Haemophilia organisations and the World Federation of Haemophilia.
Celebration of this day is a broad step to increase awareness among the people around the world about the hereditary genetic disorder called Haemophilia. World Haemophilia Day is celebrated to encourage people to improve the lives of Haemophilia patients and to raise awareness of bleeding disorders.
The date was chosen to honour Mr Frank Schnabel the founder of the World Federation of Haemophilia (WFH), whose birthday falls on the same date and the day is supported by the World Federation of Haemophilia (WFH). The Haemophilia Awareness Day was first established in 1989.
The general term haemophilia describes a group of inherited blood disorders in which there is a life-long defect in the clotting mechanism of the blood. Blood contains many proteins called clotting factors, and these work to stop bleeding. The lack of clotting factor causes people with haemophilia to bleed for longer periods of time, than people whose blood factor levels are normal. However, people with Haemophilia do not bleed faster than other people. Haemophilia is a condition in which bleeding is prolonged. It is present from birth and normally inherited; you cannot 'catch' Haemophilia or pass it onto others.
There are two types of Haemophilia (Haemophilia A and Haemophilia B). Each type is linked to a low level of a certain clotting factor. Haemophilia A is the more common type and is linked to low levels of clotting Factor VIII. Haemophilia B is associated with low levels of clotting Factor IX. Bleeding can range from mild to severe. Bleeding is often internal, although people can bleed outside the body too. Other symptoms include spontaneous bleeding, bleeding into the muscles or joints, bleeding for a prolonged period after having surgery, having a cut or dental work and big bruises. In very mild cases, bleeding may be for a shorter duration and may only arise after injury or surgery. Treatments for haemophilia involve injecting the missing clotting factor into the bloodstream.
On the 4th February, 2015 the then Minister for Health Dr Leo Varadkar launched the Updated Severe Bleeding Disorder Alert Cards (SBDAC) for people with Haemophilia in Ireland. The card is designed to alert staff in Emergency Departments that if a person with Haemophilia or a severe bleeding disorder attends an Emergency Department and shows the SBDAC, staff should immediately phone the expert centre to get advice on appropriate treatment which should be given within 30 minutes. People with severe Haemophilia need to be triaged immediately and treated with factor concentrates for any bleeding episode without delay and each hospital in the State stocks an emergency supply of these medications.
There are 3 Haemophilia Comprehensive Care Centres (3CCC) in Ireland and a Treatment Centre.
The 3 Comprehensive Care Centres are based in:
• The National Coagulation Centre, St. James’s Hospital, James Street, Dublin 8.
• Our Lady’s Children’s Hospital, Crumlin, Dublin 12
• Cork University Hospital, Wilton, Cork.
The Treatment Centre is based in:
- University Hospital Galway
The Irish Haemophilia Society (IHS) and the National Haemophilia Council (NHC) supported by the HSE work together to improve the life of Haemophilia patients and to raise awareness of bleeding disorders.
For further information regarding Haemophilia and World Haemophilia Day 2017 you can contact the Irish Haemophilia Society: www.haemophilia.ie or Ms. Gráinne Leach, Chief Officer, National Haemophilia Council, Health Service Executive, Mill Lane, Palmerstown, Dublin 20 Tel 01 6201708. E-mail: firstname.lastname@example.org
Last updated on: 13 / 04 / 2017