+  Hemophilia in Pictures
 +  History of Hemophilia

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Case Studies

Case 1. Master Spring Flower aged 14.
(A case of low self-esteem,parents under financial and social strain))

Case 2. Mr. Honey Drop aged 18.
(A case of knee damage,discontinuance of studies,financial distress)


Case 3. Mr. Iron Will aged 23.
(A case of severe hemophilia,psychological stress on collapse of marriage)

Case 4. Hard Dreamer aged 25
(A case of frequent discruption to studies,parents under emotional and financial stress)

Note:The information provided here has been collected mostly by person all interviews (including visits to home in some cases) by K Natarajan who also serves the chapter as a volunteer, forastudyon the psycho social conditionsoff a milies of persons withhemophilia.Namesofthepersonshavebeenchanged to protect their privacy.

Case 1. Master Spring Flower aged 14.
(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 wouldn’t stop however much they tried at home. He was taken to St John’s 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 haematuria (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 boy’s 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 boy’s 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 can not spend so much money”. The boy’s 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.

The boy has one more brother and two sisters and none of them have been tested for hemophilia/for carrier.
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Case 2 Mr. Honey Drop (age 18)
(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 John’s 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 father’s 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 family’s 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 cousin’s son (son of his mother’s sister’s daughter) also has hemophilia, Type ‘A’.
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Case 3. Mr. Iron will (age, 23)
(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 father’s 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.
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Case 4. Hard dreamer (age, 25)
(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 John’s 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.

 

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