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
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
Generally speaking, do
children with hemophilia go to regular schools in India and join the mainstream
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
Does depression hit
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.
Mrs. Thilaka Ravi/S