Lack of awareness and unavailability of medicines are the major issues concerned with the treatment of Haemophilia.
By Priyankaa Srinivasan
Bengaluru, April 20, 2019
Bleeding is a common factor in the life of Mohammed Ghous, a 13 year old boy. Mohammed needs to carefully perform his daily chores to avoid bleeding in any form. Mohammed misses out on classes in school, because of his daily dose of medicines. When he was 9 months old, his parents realized he was suffering from Haemophilia.
Haemophilia is a congenital chronic disease which is caused due to lack of clotting proteins. Haemophilia broadly has two types, namely, factor 8 deficiencies which is also called Haemophilia A, and factor 13 deficiencies or Haemophilia B. Whether it is type A or B, the clinical manifestations are the same. In order to know the kind of haemophilia that has affected the victim, a laboratory investigation is needed. Haemophilia is more prevalent among men, and there is a reason behind it. Women usually have one pair of X chromosomes and men have one X chromosome and one Y chromosome. Since X chromosome is responsible for transferring the haemophilic gene, men usually suffer. Women have another normal X chromosome along with the defective one, which prevents them from suffering. Thus, in Haemophilia, men are called sufferers and women are called carriers. This also does not mean that women cannot suffer from the disease. If two defective X chromosomes have been passed on to one woman, there is a chance of suffering.
“I suffer from joint aches most of time, and joints are the source of bleeding. Sometimes bleeding stops in a few minutes, otherwise, I bleed profusely for a long time”, says Mohammed Ghous. His mother, Khamrunissa Ghous, discontinued him from school for a while, so that he could get adjusted to the disease.
Haemophilia not only interrupts the life of children, but adults also are sufferers. Kiran, a cab driver is also a Haemophiliac, and he says that driving with pain in his left hand is the major challenge. “I’m very passionate about driving, but changing the gear with the elbow pain that I have is very difficult.”
A small cut can cause profuse bleeding in Haemophiliacs and immediate medical attention is needed in such a case. Khamrunissa Ghous says, “One day Mohammed started to bleed in the middle of the night, and he almost bled for about three hours by the time we reached the Haemophilia center for his treatment.”
Patient's relatives waiting for their loved ones to get treated
Suresh Hanagavadi, Founder of Karnataka Haemophilia Society says, “Haemophilia contributes to both internal and external bleeding. For example, males who have severe Haemophilia may bleed heavily after circumcision. The most frequent sites of internal bleeds are knee, ankle and elbow joints. External bleeding can occur at the places like the mouth and the lips.”
As mentioned earlier, lack of awareness is one of the problems when it comes to diagnosis of the disease. Kalana Gowda, a doctor and a Haemophiliac from Davangere says, “My parents doubted that I could be suffering from Haemophilia, considering that my maternal uncle died of the disease. At that point, we had no idea of the disease.” Kiran’s uncle also suffered from Haemophilia, and he died of the disease because of lack of awareness of the disease. Along with the problem of lack of awareness, the expenses on medication are another problem. “India is not fully equipped to produce medicines for Haemophilia. Since these medicines need to be imported, the cost is very high”, says Suresh Hanagavadi. The approximate cost of treatment can go up to 10 lakh anually. Both Kiran and Mohammed’s family live on very little income and most of the money that they earn goes on buying injections and medicines.
