World Hemophilia Day is held every year on 17th April 2020 to raise international awareness on hemophilia and other blood disorders. The event is held annually on the 17th of April on the birthday of Frank Schnabel, the founder of the World Federation of Hemophilia.
World Federation of Hemophilia started in 1963, celebrates the advances made in treatment as well as raise awareness and highlight the issues related to the care of hemophilia or other blood disorders to the general public. It educates hemophiliac about disease management and lobbies for enhanced medical treatment. The organization has over 113 members and is recognized by the WHO.
The theme of World Hemophilia Day 2020 is “Get+involved” to ask everyone to help the World Federation of Hemophilia with its theme “treatment for all” both at the global and community level. The World Federation of Hemophilia would like everyone to get involved from patients, their family members, and their caretakers to corporate partners, volunteers, and people who support their National member organization to increase knowledge about different inherited blood disorders and the need to improve patient care around the world.
With the present COVD-19 threat many events have been canceled the World Federation of Hemophilia is encouraging people to move the celebration to the community online. Participants are encouraged to write their stories, post about their experiences on social media, and share the posters and other material with your community.
In India, various events are generally organized in different states across the country by the Indian Hemophilia Foundation in partnership with the Ministry of Health and Family Welfare. Usually, on this day medical facilities are provided to the needy, and awareness about hemophilia is increased through various events and programs.
What is hemophilia?
Hemophilia is an inherited blood disorder where the blood does not clot properly. This can lead to spontaneous bleeding and excessive bleeding after an injury or surgery. Your blood contains blood-clotting proteins that help to stop bleeding. People with the disorder contain lower levels of factor VIII (factor
or factor IX (factor 9). The lower the level of blood clotting protein will increase the probability of bleeding leading to serious health problems. There are two types of hemophilia:- Hemophilia A is more common, caused by low levels of factor VIII
Hemophilia B occurs in around 20% of cases and is caused by lower levels of factor IX.
The symptoms of hemophilia can vary from mild to severe. People with severe hemophilia can bleed for no reason or have “spontaneous bleeding”. In children, the symptoms may occur when the child is 2. Common symptoms of hemophilia include excessive bleeding from cuts or injury, several large bruises, painful or swollen joints, blood in stool or urine, and nose bleeds.
Most forms of hemophilia are inherited and are caused by a genetic defect. Acquired hemophilia is a rare condition.
Only 20000 patients are registered under the Hemophilia Federation of India, over 1.5 lakh are not registered until diagnosed. It is estimated over 80% of Indians with hemophilia and other blood disorders remain undiagnosed. India has over 2 lakh cases and is estimated to have the second-highest number of global patients with Hemophilia A.
There is no known cure for hemophilia. If the condition remains undiagnosed repeated bleeding into joints and muscles can lead to disorders such as arthritis, permanent bone deformity, synovitis, and muscle atrophy. Diagnostic centers throughout the country can help with early diagnosis of the disorder. There are various treatment options to help patients lead a more full life.
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