Explainer: Why people celebrate World Haemophilia Day

• This year, as the world comes together on Wednesday to mark the day, the theme is “Equitable access for all: recognizing all bleeding disorders”.
• The event provides a platform to educate people about the disorder, all the while encouraging improved accessibility to the affected.

World Haemophilia Day is celebrated every April 17, aiming to raise awareness about the rare genetic bleeding disorder.

This year, as the world comes together to mark the day, the theme is “Equitable access for all: recognizing all bleeding disorders”.

The event provides a platform to educate people about the disorder, all the while encouraging improved accessibility to the affected.

The days also see that funds are raised to support patients.

By raising awareness, there is an increase in sustainable and equitable access to care and treatment.

History of the day

The day was first celebrated on April 17, 1989, as a tribute to Canadian businessman Frank Schnabel, who was born with severe hemophilia A.

He established the World Federation of Haemophilia (WFH) in 1963.

His vision was to improve treatment and care for “the hundreds of thousands of hemophiliacs” worldwide through a new international organisation.

What is haemophilia

Haemophilia can cause continuous bleeding both internally and externally, due to the absence of blood clotting proteins.

The disease arises from a lack of clotting factors, which is a function of the x chromosome.

Both men and women have an x chromosome, with women having two and men having one, xy.

Since women have two x chromosomes, one steps into place in the case that one is abnormal, helping in stopping unnecessary bleeding by buffering the abnormal x.

This does not, however, mean that women who have the abnormal x gene that they pass on from their daughters, do not suffer from bleeding.

Women who carry the abnormal x, also suffer sometimes as much as the men.

As of now, while there is no cure for this condition, there are various treatments available to manage the disorder.

Hemophiliacs begin experiencing symptoms as early as during birth.

Kenya Haemophilia Association chairman Dr. Kibet Shikuku says one in every 10,000 Kenyans suffers from hemophilia.

This means there are at least 5,300 Kenyans with haemophilia.

Why do we celebrate the day?

April 17 provides an opportunity to educate people about the causes, symptoms, diagnosis, and management of haemophilia.

It is a day when people can talk and learn about the challenges faced by those living with the condition.

World Haemophilia Day also fosters a sense of community and solidarity among the affected persons, their families, caregivers, healthcare providers and advocacy organisations.

It also reinforces the importance of support networks and mutual understanding.

The day highlights the need for ongoing research, innovation, and advancements in the field of haemophilia treatment and management.

During this day, the governments are reminded of the need for health care strategies to help the persons affected by haemophilia, and their families.

Provided by SyndiGate Media Inc. (Syndigate.info).