CASE

STUDIES
Case study of 4 individuals suffering from
Hemophilia.
The cases mentioned under this section of investigatory project are actual patients
whose names have been intentionally removed for the sake of anonymity as requested
by them.

Case 1.
(A case of low self-esteem, parents under financial and social strain)
When he was four years old, he fell from a chair and his mouth struck at the
brim of a vessel on the floor. There was heavy bleeding and the flow
wouldnt stop however much they tried at home. He was taken to St Johns
Medical College Hospital as advised by some doctors. At the hospital he was
diagnosed as a person with hemophilia, Type A at a mild level of
12.5%. The parents were briefed about the nature of the disorder. The boy
was to avoid fall and injuries. He has been having bleeding episodes twice a
year. He has also had hematuria (blood passing with urine) on a few
occasions. The usual bleeding site is gum. There has been no serious heavy
bleed so far.
Once the boys condition was known, the school management asked the
parents to put him in some other school as they could not take any special
care about him. Now he is studying in a school where his mother works as a
teacher. In this process he lost one year of academic study. At the school,
boys tease him for being weak and avoiding sports and games. At times he is
seen weeping silently. Mother does a lot to lift his spirits by encouraging
words. She talks to his class teachers if necessary.
The boys academic performance is extremely good. He is also very good at
drawing and painting. He wants to become an engineer.
His father is a tailor. This is a disease fit for rich people he says. We poor
folks cannot spend so much money. The boys mother said that they had
spent so far about Rs 80,000 though they had not kept any record. They have
borrowed and she has sold her jewels. The relatives do not provide any
financial help. How about emotional support?
The less said about it, the better. she replies adding they say that the boy
has hemophilia because my heart is bad. Our participation in social functions
is minimized.
To a question as to what they expect the government or society to do the
parents said that they wanted that expenses towards treatment, education and
employment of persons with hemophilia should be taken care of by
government.

Case 2
(A case of knee damage, discontinuance of studies, financial distress)
At his first year of birth, he used to have bruises often all over his body.
They would disappear after a few days. He was taken to St Johns Medical
College Hospital where his condition was diagnosed as Hemophilia A at a
severe level, less than 1%. He has had bad bleeds, blood vomiting and also
bleeds into his joints. The left knee has become stiff due to prolonged bleeds
and also because of a fall a few years ago. The knee bones have been
dislocated.
He used to be treated with cryoprecipitate. On many occasions he used to
apply ice, take pain killers during the bleeds. He started receiving Factor
Replacement since a few years. He continues to have bleeds. He is very
much into physiotherapy and regular exercise.
He was admitted to school at the age of three. He had to change school since
the management refused to take any care about him. At present he has no
problems with teachers or school mates on account of hemophilia. Before
coming to X standard he had to discontinue schooling for two years due to
prolonged absence necessitated by pain caused by bleeds. .
His father who was working at a cinema passed away suddenly due to heart
attack a few years before. His mother says that the boy is often depressed
over his physical condition which keeps him away from his peers in games
and other activities. He is often worried about the huge cost of treatment
incurred by his poor family because of his disorder.
Since his fathers death, the family is looked after by one of his brothers who
are an electrician. There is one more brother and a sister to be married. None
of them have been tested for hemophilia/carrier.
The familys financial condition is very weak. They have huge debts. There
is no financial support from his relatives Social contacts have been reduced
to the minimum.
His cousins son (son of his mothers sisters daughter) also has hemophilia,
Type A.

Case 3.
(A case of severe hemophilia, psychological stress on collapse of
marriage)
He was diagnosed properly only when he was eleven years old. He had gone
for a swim in the river in a southern village and his head struck a boulder.
He became giddy and unconscious. At Christian Medical College Hospital,
his condition was diagnosed as hemophilia, A with severity at less than
1%. He has frequent bleeds in the knee. His right knee is swollen. He
suffered a head bleed again while swimming in a pool and had to be in
hospital with frequent infusions of clotting factor.
He says that when there is severe pain, he loses control of himself, throwing
things about, or bites his hand to vent his feelings of helplessness. Usually
he apples ice, takes pain killers to relieve pain.
He got married recently but the wife walked on him the very next day. He
says that he can not be blamed because his condition was made known to the
bride and her family before marriage. The matter is before court. But the
broken marriage has shattered his self-esteem. He goes into frequent bouts
of depression.
He is very smart and handles his fathers business very efficiently. But he
never went to a school as his parents feared that he might have problems
there and with other children because of his health condition.
He has two sisters, married(not tested for carrier), His elder brother died a
few years after birth.

Case 4.

(A case of frequent disruption to studies, parents under emotional and

financial stress)
He cut his small toe when he was one year old. There was unusual bleed. He
was given blood transfusion at a local hospital. He started bleeding
frequently and from different sites like, gum, nose and ear. At the age of
four, he bled from forehead and hip after a fall. Tests were taken at Christian
Medical College Hospital, Vellore and he was diagnosed as having Type A
Hemophilia with severity at less than 1 %.
He had a major bleed in the urinary tract for which he was treated at St
Johns Medical College Hospital, Bangalore. His right knee is swollen
making movements a little difficult. He is doing physiotherapy and exercises
regularly. He is getting bleeds twice a year.Often he tries to manage pain by
applying compression with wet cloth over the area and giving it a rest.
He was admitted to school at the age of five. His frequent absence due to
pain cost him one full academic year. He has studied up to X standard. He
used to go to a workshop run by a relative. He found that he could not stand
for long at the lathe due to pain in the knee. He is therefore without work.
He is willing to do work that does not involve much physical strain. As a
grown up adult he feels guilty being idle at home. He feels ashamed in
asking money from his father for bus fare or going out with his friends etc.
His father, a construction worker is the only earning member of the family.
He is 54 and his income depends on the availability of work. He is not
educated and he feels shy in approaching people for work for his son.
The boy has two sisters. Both are married. But before marriage the fact that
there is hemophilia in the family was not disclosed. The eldest sister has
delivered a boy who at the age of three has been diagnosed as having
hemophilia, Type A. Fearing social stigma the family wants to keep this
fact a secret from neighbours. Now the possibility of another sister
delivering a baby with hemophilia looms large and threatens them.