Learning to live with haemophilia

It is hard to make young children understand they cannot live a normal childhood with a crippling disease. Jaya Shroff tells us more.

For Rashmi Sachdeva, explaining the dangers of haemophilia –– the inherited bleeding disorder –– to her toddler is an uphill task. Her two-year-old son is haemophilic, and every time he suffers a fall he has to be rushed to the nearest hospital where he is administered factor VIII, that helps in clotting the blood to prevent excessive bleeding.

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“I cannot deny this is a problem, but he has been in a protected environment so far. I am dreading the day he starts going to school. The very fact that he can’t play like the normal children is absurd, and to explain it to an innocent child will be difficult,” says Sachdeva.

“It is heartbreaking that your child cannot live a normal life for no fault of his and in addition to this, the costs of the treatment are an added burden,” she adds.

Aadish Jain, who is just over six years old, has matured well before his age, thanks to his disease. “He understands he has a problem so he does not go out and play,” says CP Jain, Aadhish’s father.

A few days ago, Jain overheard Aadish’s conversation with his mother, where he was saying, “There is no point playing. If I hurt myself, I will have to be taken to the hospital where I will be given injection. So for a few minutes of fun, I cannot risk the pain of the injection.”

Jain says it is not always easy to tell Aadish about his condition. “It is sad that I have to stop him from going to his own aunt’s house as there are two children of his age who insist that he play with them. A lot of time he refuses, but he is just a child after all and would want to play. If he hurts himself, it is a torture for him and for us.”

According to the latest statistics, one in 10,000 males are haemophilic. “In India, of the one lakh people who suffer from haemophilia, only 15, 000 are identified. Of these more than 67 per cent are children,” says Vijay Kaul, founder member of the Society for Haemophilia Care (SHC), India. “It is shocking that almost 90 per cent of these are disabled owing to lack of proper treatment. The government is initiating steps to help the haemophiliacs, but it is not enough.”

Every dosage of factor VIII costs approximately Rs 2,000. Doctors advise that a patient is administered a dose every third day, but owing to the steep expenditure, most people take it only when needed.

“People approach us with uncontrolled bleeding, blue patches or swelling in knee and joints. It is important that people learn when to take the patient to a doctor, because sometimes delays can lead to unnecessary complications, resulting in death sometimes,” says Dr Renu Saxena, Head, department of haematology at the All India Institute of Medical Sciences (AIIMS).

“If there is a family history of haemophilia, it is best advised that a patient undergoes a pre-natal diagnosis in about 12- 20 weeks of pregnancy. If the child is haemophilic, the decision to abort the child can be taken then, which saves the pain of seeing the child suffer as he grows.”

In Delhi, AIIMS and Sir Gangaram hospital offer the pre-natal diagnosis test of haemophilia.