World Hemophilia Day is celebrated every year on April 17. The purpose is to make people aware of this rare bleeding disorder and to give succour and support to the hemophilia affected persons who live with us.
The word hemophilia is a shortened version of the term haemorrhaphilia.
Hemophilia is a rare bleeding disorder in which the blood does not clot properly. The disease occurs due to alterations in genes which help to regulate our body from continuous bleeding. The medical world has not found a complete cure for this bleeding disorder.
The theme for World Hemophilia Day 2024 is: ‘Equitable access for all: recognizing all bleeding disorders’.
Hemophilia cases have been found way back in ancient Egypt.
Queen Victoria of England was a carrier of hemophilia B, or factor IX deficiency and passed on the trait to three of her nine kids.
The disorder can cause bone related issues, joint pain, swelling and internal bleeding. Undiagnosed cases can turn fatal.Hemophilia A affects about 1 in 5,000–10,000. Hemophilia B affects about 1 in 40,000 males at birth.
Myths and facts
Myth: If a person with hemophilia gets so much as a paper cut, he or she will bleed to death.
Fact: In most cases, a minor cut or scrape will stop bleeding on its own with the help of just a Band-Aid. Internal bleeding caused by a trauma can lead to organ and tissue damage.
Myth: People with hemophilia have a short life expectancy and can’t live normal lives.
Fact: Prophylaxis treatment, can help people live a full, active and long life.
Myth: Only men have bleeding disorders.
Fact: Although hemophilia is much more common in men, women can have it. About 1/3 of women who are carriers of hemophilia experience bleeding symptoms.
Myth: It’s possible to outgrow hemophilia.
Fact: Hemophilia is a genetic disease. People have hemophilia for life. However, scientists are searching for a cure through gene therapy.
Myth: Hemophilia can cause HIV/AIDS.
Fact: Blood received from HIV/AIDS patients can infect people. However, proper lab investigation to avoid such bad blood can prevent such dangers.
Myth: People with hemophilia have a family history of the disease.
Fact: Almost 1/3 of hemophilia cases occur in people with no family history of the bleeding disorder. That’s because the gene mutation that causes hemophilia can occur spontaneously.
Myth: A woman with a bleeding disorder can’t have children.
Fact: Women with bleeding disorders certainly can have children. However, as a safety measure, a woman should consult her hematologist and obstetrician to address any pregnancy risks based on her individual health.
Myth: Hemophilia is a royal disease and all people with hemophilia are descendants of Queen Victoria.
Fact: Queen Victoria was a carrier of hemophilia, and the condition was passed on through generations of European royal families. But, hemophilia is found throughout the world in all types of people.