World Haemophilia Day 2021: “Adapting to change - Sustaining care in a new world.”

What is Haemophilia?

Haemophilia is an inherited condition that causes bleeding for a long time after injury or surgery and painful swelling of the joints either after injury or even without injury. 

("Inherited” means that the disease is passed from parents to children through their genes). Haemophilia is the commonest X-linked disorder affecting approximately 1 in 10,000 male births; whereas women act as carriers of haemophilia.

When is it Celebrated?

World Haemophilia Day (WHD) is celebrated on April 17 each year to raise awareness about haemophilia and other inherited bleeding disorders. 

It was started in 1989 by the ‘World Federation of Haemophilia’  in honour of WFH founder Frank Schnabel’s birthday. 

The theme of WHD 2021 is “Adapting to change: Sustaining care in a new world.” 

For "Bringing the global bleeding disorders community together" it provides an opportunity to focus on the importance of sharing knowledge about the disorder and access to care and treatment; so that family, friends, colleagues, and caregivers can work together to provide support to persons living with an inherited bleeding disorder.

What are the types?

Types of haemophilia are

Haemophilia A – It is a more common type of haemophilia. It is due to deficiency of clotting factor VIII (factor eight).   

Haemophilia B- It is less common, only about 20% of people with haemophilia have haemophilia B. There is a deficiency of clotting factor IX (factor nine) in haemophilia B.

What is the cause?

Haemophilia occurs due to a deficiency of clotting factor & this results in increased bleeding.  There are two types of Haemophilia A (clotting factor VIII deficiency), which is more common and occurs in about 1 in 5,000 births. Haemophilia B (factor IX deficiency) is less common and occurs in around 1 in about 20,000 births. 

What happens in haemophilia?

Patients with haemophilia, bleed for a longer time than others after an injury, injections, operations or tooth extractions. 

They may bleed inside (internally), and in the joints - knees, ankles, and elbows. 

This bleeding can damage the joints and internal bleeding (head, abdomen) may be life-threatening.

Haemophilia patients bleed for a very long time after injury and often have delayed bleeding e.g. after a few days after tooth extraction or trauma. 

Patients with severe haemophilia can bleed even without injury-spontaneously, this usually occurs in severe haemophilia patients.

References:

1. https://www.worldhemophiliaday.org/
2. https://nhp.org.in/en/health-programmes/99-world-haemophilia-day
3. https://www.wfh.org/en/events/world-hemophilia-day
4. https://news.wfh.org/world-hemophilia-day-2021-adapting-to-change-sustaining-care-in-a-new-world/
5. https://haemophilia.org.uk/events/world-haemophilia-day/
6. https://haemophilia.org.uk/get-involved/world-haemophilia-day-2021/
7. https://www.hfq.org.au/get-involved/events/world-haemophilia-day
8. https://haemophilia.scot/whd21/