The World Hemophilia day is celebrated on April 17 every year
Hemophilia is a bleeding disorder where the blood does not clot
Preventive treatment for hemophilia can prevent several complications like joint damage and brain bleeds
The theme for this year’s World Hemophilia Day is Treatment for All – The Vision of All
The World Hemophilia Day 2016 on April 17, 2016, focuses on increasing awareness and providing treatment for all hemophilia patients with the slogan “Treatment for All – The Vision for All”.
Hemophilia is an inherited bleeding disorder where the patient’s blood does not have a protein necessary for clotting blood. Patients with hemophilia A lack the clotting factor VIII while those with hemophilia B lack the clotting factor IX. Therefore, if the patient suffers from an injury, he continues to lose blood and a minor to moderate injury can even have serious consequences.
Internal bleeding can occur in the urinary tract, intestines and muscles. Bleeding into the joints can result in damage to the joints. A small injury can produce bleeding within the brain, resulting in death.
Statistics of Hemophilia
Hemophilia is a genetic disorder that affects the male child.
Global statistics indicate that around 1 out of every 1000 people has a bleeding disorder.
In India, the estimated incidence of Hemophilia A is 1 per 5,000 male births while Hemophilia B is 1 per 30,000 male births.
In the United States, around one male child out of every 5000 is born with hemophilia.
India (11,586) ranks second to USA (13,276) in the number of patients affected by Hemophilia A.
Hemophilia in India
Currently, India has over 70,000 patients affected with Hemophilia A and B. But compared to other countries, the prevalence of the disorder is low (0.7 per 1,00, 000 population) in India.
‘Awareness of hemophilia and access to its treatment could help to prevent complications in several patients.’
Hemophilia is treated using clotting factors and several global reports suggest that India needs about 23,17,20,000 IU of clotting factor every year to treat patients.
Also, prevention of bleeding disorders must be a priority which arises the need for the initiation of a national program on genetic disorders in India.
World Hemophilia Foundation (WHF)
The World Hemophilia Foundation plays an important role in increasing awareness and providing treatment for hemophilia. It advocates availability of adequate safe treatments and provides adequate training to health care professionals to treat hemophilia patients. Its slogan for the World Hemophilia Day 2016 “Treatment for All – The Vision for All” echoes the same.
The foundation hopes to reach out to and treat not only patients with hemophilia but also those with other bleeding disorders like von willebrand disease, rare factor deficiencies and inherited platelet disorders. This year, as a symbol of creating hemophilia awareness, all famous monuments around the world will be “Lit up in Red”.
Hemophilia Diagnosis and Treatment
Hemophilia is diagnosed based on a blood test. Prenatal genetic testing is used to detect cases that run in families. In developed countries, hemophilia may be diagnosed early, but in other nations, affected individuals may not even be aware that they suffer from it or that they are likely to transmit it to their offspring.
Several patients with hemophilia receive treatment only when they suffer from an episode of excessive bleeding. Blood products have been used to provide clotting factors, which do have a risk of transmission of diseases like HIV and hepatitis B. However, with the safety precautions that are currently used, the risk of transmission of these diseases is extremely low. Moreover, recombinant clotting factors are also available which are not made from blood products and are therefore safe.
Several doctors now advise starting treatment for patients with severe hemophilia on a preventive basis. Today, treatment can even be administered at home. This approach has several advantages. It reduces the chances of joint bleeding and therefore joint damage. It also reduces the risk of a brain bleed with minor trauma, thereby reducing the need for repeated hospitalizations and overall mortality.