Children are the most important segment of our society. Sometimes nature is not kind with them. Some children are born with some genetic disorders and have to live with it. One such condition is Hemophilia where the child has uncontrolled bleeds mostly into joints. This is because their blood does not clot/coagulate. The treatment is fortunately very much available but very expensive and hence beyond the reach of thousands of parents. Lack of treatment means unbearable pain, joint damage & physical disability.
In India (unlike the developed world) most of these children have to face disabilities in their childhood. They drop out of the schools, get stigmatized and become life long dependents.
BUT ALL THIS IS PREVENTABLE.
If the awareness and treatment are made accessible and affordable a child will not be disabled & can receive education in schools & colleges and contribute to the betterment of our society and country.
Magnitude of the problem:
There should be over 1 lakh (one hundred thousand) people affected with hemophilia in India. At least double of this are Carriers (females) who carry the gene. This estimate is based on the WHO stated prevalence rate of 1 in every 10,000 population irrespective of caste, creed, religion or place. World Federation of Hemophilia- an affiliate of WHO also bases its statistics on this ratio.
However, due to lack of awareness and diagnosis in most parts of the country people are not diagnosed. Only 10% are diagnosed.
More than 90% cannot afford the prohibitive cost of medicines which is produced from human blood.
Majority of the detected cases are already physically challenged which could have been prevented.
Children drop out of the schools due to pain and insecure feeling. About 8% of the people already diagnosed as having hemophilia have contracted fatal viral infections due to frequent transfusions of unscreened blood.
About 30% are estimated to be infected with Hepatitis
The fortunate thing is that treatment is available, though expensive. If awareness and treatment are accessible timely people can lead a near normal life and can contribute to the society as healthy citizens as happens the developed and several developing countries.
Let us work together for prevention of disabilities.
Let us help the new born and the very young so that they can lead a normal life.