Children With Hemophilia Need Special Care and Support: NGO Speaks

Hemophilia is an inherited, incurable bleeding disorder that can deal a crippling blow to the person with hemophilia (PWH) if repeated spontaneous bleeds are not treated promptly. The condition caused by the absence or deficiency of clotting factors in the blood can be temporarily treated by infusing Anti Hemophilic Factor (AHF) injections.

Medindia interviewed K. Parthasarathy, Co-founder and Vice President, Hemophilia Society-Madras Chapter at Voluntary Health Services Hospital and heard him speak on the yeoman services rendered by the society in facilitating treatment at affordable cost for patients and families reeling under the burden of dealing with the bleeding disorder.

How did a professional banker like you get involved with the Hemophilia society?

My son is a person with Hemophilia. He is now pursuing a doctoral degree in Bio-Chemistry and Molecular Biophysics in the US, is married and has a child. But his growing years as a hemophiliac were a struggle for him and for our family because a couple of decades ago there wasn’t enough awareness about Hemophilia in India. Most doctors were clueless about the diagnosis and treatment of this bleeding disorder. Treatment was expensive and it was common for hemophiliacs to either be crippled or die of brain bleeds. From 1990 onwards the Hemophilia Federation of India pioneered by Ashok B. Verma started importing Factor concentrates from Italy and distributed it to each chapter in India at subsidized rates. The challenge of raising a child with Hemophilia led me to guide other hemophiliacs and their families struggling to cope with the problem.

How difficult is it for children with hemophilia and their families dealing with this incurable blood disorder?

Internal bleeding in joints causing excruciating pain can happen for no reason at all or by the slightest strain or a mild fall when the child begins to crawl or take its first steps. Now we have hematologists who understand and explain the condition to patients and families. But even now there are GPs who treat babies for colic pain when they are actually wailing in pain due to internal bleeds. For parents the treatment with Factor concentrates is highly expensive and is not covered by insurance and that compounds the misery.

Generally speaking, do children with hemophilia go to regular schools in India and join the mainstream society?

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With enough care, support and encouragement, children with hemophilia should be going to school like normal kids because this is only a disorder and not a disease. But unfortunately in India schools often refuse admission for hemophiliac children fearing medical emergencies or complications while the child is in school. Hence parents hide the fact that the child is hemophiliac and admit them in schools. Caught in this vicious cycle is the unfortunate child with a serious bleeding disorder unable to cope with the rigorous demands at school, which would leave even a normal child, drained.  For instance unknowingly teachers subject these children to the routine punishment of standing outside the class for two hours, kneeling in the hot sun or running five times around the school ground.

Many cases reported in the news papers of a child dying after the teacher hit him on the head, a child dying after kneeling for hours in the sun have all been hushed up later. Most of these children were hemophiliacs. Of the many sad cases I personally know, one stands out in mind. A Hemophiliac child was punished for coming late to class and made to stand out for two hours, the child collapsed outside the class because standing for long hours can trigger internal bleeding at the joints. The child is now a 38 year old married man, who still limps badly because of the punishment that very nearly crippled him.    

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Does depression hit hemophiliac children?

Most certainly, yes. We explain the condition to children who come to our medical centre and when they understand the condition they handle it well.  But hemophilia is known to cause emotional disturbances within families and I know of marriages that broke down at some point, because women are blamed for being the carriers for this blood disorder. Mothers who diligently care for their hemophiliac kids get blamed for passing on the genetic disorder to their sons. We have counseled adolescent hemophiliacs who refused to talk to their mothers and even counseled fathers who wanted to walk out of their marriage.

How does the Hemophilia Society help persons with hemophilia cope with the disorder?

Anti Hemophilic Factor injections are not manufactured in India and the main objective of the Society is to make these imported AHF injections available at an affordable cost to sufferers.  The society of Hemophilia Chennai chapter has a comprehensive care centre at Voluntary Health services Hospital and we treat patients who are admitted on an emergency basis. We administer the Factor concentrate for 2 days, introduce them to physiotherapy and counsel the patient and the family on how to deal with the disorder and the medical emergencies it entails. Most people who are affected by this disorder come from poor, illiterate families and we educate them on the condition to prevent permanent disability and death.

Sometimes, parents whose first child is a hemophiliac ask us if there is a preventive measure to avoid a repeat. We inform them about the availability of prenatal diagnosis to detect the condition. We offer several scholarships to students from school years onto their higher education. After 22 years of serious representations to the government, the TamilNadu government has included Hemophilia in the budget. Henceforth Factor Concentrates will be available for all hemophilia patients at all government hospitals, free of cost. This is a proud moment for us.

Medindia wishes the Society for Hemophilia-Chennai chapter, all success in its endeavor to brighten the lives of persons with hemophilia and their families.

Source-Medindia
Mrs. Thilaka Ravi/S