The World Hemophilia Day was celebrated across the world on 17 April 2017 with the theme “Hear Their Voices”. The main aim of this campaign is to unite the community and show support for the millions of women and young girls affected by bleeding disorders.
The campaign urges women to join the conversation by sharing their story about how the bleeding disorder affected their lives so that others can learn about the condition.
• The day was first established in 1989 with support of the World Federation of Hemophilia (WFH).
• The date 17 April was chosen to honor the founder of WFH, Frank Schnabel, as his birthday falls on the same day.
• Hemophilia is a rare disease. About 1 in 10,000 people are born with it.
• It is generally an inherited condition in which bleeding is prolonged.
• In rare instances, the condition may develop later in life, affecting people above the age of 50 years.
• Hemophiliacs have lower levels of clotting factor in the blood and so, the bleeding continues for longer periods unlike in case of a normal person where normal levels of clotting factor causes the blood to clot and stop the bleeding.
• It is observed every year to improve and sustain care for people with the inherited condition across the world.
• There are two types of hemophilia:
- Hemophilia A: It is a more common type and is linked to low levels of clotting factor VIII.
- Hemophilia B: It is rare and is linked with low levels of clotting factor IX.
• The condition is diagnosed by taking a blood sample and testing the levels of clotting factor VIII & IX.
• The main symptom of the disorder is prolonged bleeding and it can range from mild to severe.
• The bleeding is often internal but it can happen externally as well.
• 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, arising only after an injury or surgery.
• In severe cases, bleeding will be spontaneous, with more frequency and no obvious cause. It may go into the joints and muscles of the body and cause swelling, pain, stiffness or an ache in using the muscle or joint.
• Repetitive bleeding into a joint can also cause arthritis.
• If left untreated, severe cases of hemophilia can lead to a shorter lifespan.
• The treatment for the condition involves injecting the missing clotting factor into the bloodstream.
Thus, this campaign is not only educating more women about the rare disorder but it is also creating a common united platform where people can interact, share stories and support each other.
When: 17 April 2017