Context

April 17 is recognised as World Haemophilia Day (WHD) worldwide to increase awareness of haemophilia and other inherited bleeding disorders.

About

World Haemophilia Day

• It was started in 1989 by the World Federation of Haemophilia (WFH) which chose to bring the community together on April 17 in honour of WFH founder Frank Schnabel’s birthday.     
• This year’s edition marked as the 30^th World Haemophilia Day with the theme of Reaching out - connect to your community.
• Its campaign will feature examples of WFH outreach initiatives such as organizing regional workshops, raising awareness of bleeding through media coverage or training health professionals and collecting data. It will combine these examples with submissions from our community about outreach efforts in their own regions or ideas about what would be helpful for future initiatives.
• This landmark day also helps to illustrate the importance of the WFH Humanitarian Aid Program—an important endeavour for the WFH that provides a range of integrated care development training programs to ensure the local infrastructure and medical expertise are available to optimize and appropriately use donated products.

Haemophilia

• It is a medical condition, mostly inherited, in which the ability of blood to clot is severely reduced, so that even a minor injury can cause severe bleeding.
• Because of the genetics involved in the way the sex of a child is determined, men are more vulnerable to haemophilia than women.
  
  

  Royal Disease Britain’s Queen Victoria (1819-1901) is the world’s most widely known carrier of haemophilia. From her, the condition spread among a number of European royal families, which is why haemophilia was once known as the “royal disease”. Victoria passed on a defective X chromosome to three of her children. Her son Prince Leopold died at age 30 as a result of loss of blood after injury. Leopold’s daughter, Princess Alice of Albany, was a carrier whose son inherited haemophilia and died at age 21.Because of the genetics involved in the way the sex of a child is determined, men are more vulnerable to haemophilia than women.

  
  
  
• The sex of an individual is determined by a pair of “sex chromosomes” (a chromosome is a DNA molecule that contains genetic information). Females are identified with an XX pair of sex chromosomes, and males with an XY pair. When an X chromosome from the mother pairs up with the father’s X chromosome, the offspring is XX (female); when an X chromosome from the mother pairs up with the father’s Y chromosome, the offspring in XY (male).
• Haemophilia is caused by a defect in the X chromosome. If a girl is born with one defective X chromosome, her other X chromosome can compensate for it. In such a case, she is a carrier of haemophilia but will not suffer from the condition herself. Only if both her X chromosomes are defective will she suffer from haemophilia herself. On the other hand, if a boy is born with a defective X chromosome, he does not have the second X chromosome to compensate for it, and will suffer from haemophilia. That is the reason haemophilia is more common among men.