World Hemophilia Day is celebrated every year on April 17 to spread awareness about hemophilia and other bleeding disorders. It is celebrated to mark the birthday of Frank Schnabel, the founder of the World Federation of Hemophilia (WFH).

“Since 1989, World Hemophilia Day is the day the whole bleeding disorders community comes together to celebrate the continuous advances in treatment while raising awareness and bringing understanding and attention to the issues related to proper care to the wider public,” a statement on the website for World Hemophilia Day read.

This year, the WFH celebrates the 30th anniversary of the World Hemophilia Day. The organization was found with a goal to provide better diagnosis and access to care for those people who are diagnosed with the disease but remain without treatment because they could not afford one. The federation conducts various fundraising programs to help such people overcome the disease and to bring them back to life.

“We believe that every person with an inherited bleeding disorder deserves access to care and treatment. Our vision of 'Treatment for All' is that one day, all people with a bleeding disorder will have proper care, no matter where they live. The mission of the WFH is to improve and sustain care for people with inherited bleeding disorders around the world,” the website stated.

The theme for World Haemophilia Day 2020 is "Get + Involved." The theme focuses on encouraging patients, family members or caregivers, a corporate partner, a volunteer, or a healthcare provider, etc to help increase the awareness and to provide access to adequate care possible everywhere in the world.

According to the Centre for Disease Control and Prevention (CDC) “Hemophilia is usually an inherited bleeding disorder in which the blood does not clot properly. This can lead to spontaneous bleeding as well as bleeding following injuries or surgery. Blood contains many proteins called clotting factors that can help to stop bleeding .”

“People with hemophilia have low levels of either factor VIII (8) or factor IX (9). The severity of hemophilia that a person has is determined by the amount of factor in the blood. The lower the amount of the factor, the more likely it is that bleeding will occur which can lead to serious health problems.”

The National Health Portal of India classifies Hemophilia into two types:

  • 1. Haemophilia A – It is a more common type of hemophilia. It is due to the deficiency of clotting factor VIII (factor eight).
  • 2. Haemophilia B - It is less common, only about 20% of people with hemophilia have hemophilia B. There is a deficiency of clotting factor IX (factor nine) in hemophilia B.

According to the CDC common signs of hemophilia include:

  • Bleeding into the joints. This can cause swelling and pain or tightness in the joints. It often affects the knees, elbows, and ankles
  • Bleeding into the skin (bruised) or muscle and soft tissue causing a build-up of blood in the area (called a hematoma)
  • Bleeding of the mouth and gums, and bleeding that is hard to stop after losing a tooth
  • Bleeding after circumcision (surgery performed on male babies to remove the hood of skin, called the foreskin, covering the head of the penis)
  • Bleeding after having shots, such as vaccinations
  • Bleeding in the head of an infant after a difficult delivery
  • Blood in the urine or stool
  • Frequent and hard-to-stop nosebleeds

National Hemophilia Foundation’s National Prevention Program provides these five tips for healthy living :

  • Get an annual comprehensive checkup at a hemophilia treatment center
  • Get vaccinated—Hepatitis A and B are preventable
  • Treat bleeds early and adequately
  • Exercise and maintain a healthy weight to protect your joints
  • Get tested regularly for blood-borne infections

The CDC reports that "Hemophilia occurs in about 1 of every 5,000 male births. Currently, about 20,000 males in the United States are living with the disorder. Hemophilia A is about four times as common as hemophilia B, and about half of those affected have a severe form. Hemophilia affects people from all racial and ethnic groups."

World Hemophilia Day
The landmark of the northern Greek city of Thessaloniki, the White Tower, is lit in red on World Hemophilia Day to raise awareness about bleeding disorders, April 17, 2015. Getty Images/ SAKIS MITROLIDIS
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