Greater awareness and free medicine are the need of the hour, say doctors, caregivers and people with haemophilia
It starts off with a drop and progresses to a steady trickle, slowly sapping life-giving blood from the body. It also bleeds into the joints, affecting them if prompt action is not taken.
For some, this happens at least 20 times a year.
That's the life of a person with haemophilia, a genetic condition that prevents clotting of the blood.
In some cases, it is diagnosed when there are haematomas, green patches across the body. When a milk tooth falls, the gums bleed.
The cost of stopping a single bleed ranges anywhere between Rs. 5,000 and Rs. 10,000.
In severe cases, the sum can run into several lakhs a year.
Though the Government offers free Anti-Haemophilic Factor (AHF), the task ahead is huge says S. Shantimala, secretary, Haemophilia Society, Coimbatore chapter.
This year, the 285-member Society's focus is to get free medicine for all, that too without any shortage. Shantimala has been an active member of the Society since it was formed on May 7, 1995 by Dr. Ramanathan Jayaraman. Her son is haemophilic.
“The chapter is like one big family where blood links the members. We know the pain a parent goes through every time a child bleeds,” she says.
She also speaks about better awareness among parents and doctors, something Rajasekar T, clinical haemotologist, Kovai Medical Center and Hospital agrees with. “You can live with haemophilia provided you take care of yourself and do regular physiotherapy.
If not, the joints are affected and a person can be crippled,” he says. It is vital for physicians to be aware of a patient's condition, says Dr. Rajasekar.
“Immediate treatment is a must. Otherwise, a vicious cycle involving the muscle and joint plays out.
I would call for more awareness among patients and physicians.”
He continues: “Everyone knows what to do in case of a traffic accident. Not so with haemophilia.
The person might need factor support immediately. It is vital to carry an identity card that instructs doctors on how to handle them.”
Shantimala says that as a parent, it is difficult to tell a child that he cannot play.
“We just allow children to live as normal a life as possible, but tell them they should avoid getting hurt,” she says. When they do get injured or when the bleeding is intense, they go in for infusion.
“In 90 per cent of the cases, we avoid transfusion, because it leads to further complications,” she says.