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.
- In the United States, around one male child out of every 5000 is born with hemophilia.
- 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.
- 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
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.
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.
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
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.
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".