• Vishal
  • RAMACHANDER
  • Nikhil
  • Kunal
  • Sai Deepak
  • Mitallappa Manjunath
  • Venkataramanappa Manjunath

I was born on 6th December 1987. I have been a resident of Bangalore since my birth.When I was born I had blue patches on the back of my head. I was born inasmallmedical centre. The doctors there suspected of Vitamin-K deficiency and gave me a Vitamin-K injection after 3 hours of my birth.  But after 3 days the blue patches increased and there was mild swelling as well.

I was shifted to a bigger hospital by the name St.Marthas.  After various tests and experimental suspicions the doctors over here ended up with the fact that I might be suffering with some bleeding disorder. But since my infancy I had occasional fo rmation of blue patches on various parts which are called SKIN BLEEDS .When I was 3 months old I was referred to CMC Vellore. The doctors here suspected that I had Haemophilia but they were not sure regarding the deficiency of the factor, but they advised me to come back when I would be 9 months old for the Factor Assay. As per the advice I was taken to CMC Vellore for the assay and the reports came out that I was a severe Hemophiliac with Factor VIII deficiency.



My factor level was less than 1% (<1%).The factor assay was done in the year 1988. Those were the times when there wasn’t a hospital in Bangalore to do the test with required standards. This was a huge shock to my parents and other family members. As it is Hemophilia is rare and obviously my parents were a bit ignorant at that stage as to how to handle me. In those days it was really difficult to even get the AHF (anti-hemophiliac factor). During those days my parents even didn’t know the existence of Hemophilia societies. But as time passed on my parents began got acquainted to handle me slowly but surely.

I was sent to a normal school when I was 4 years old. The school was neat o my residence. My parents were reluctantto send me to a far away school as they still feared that I may meet with an accident and it would be difficult to move about in such cases. But with the help and co-operation of the school authorities and hemophilia society my early schooling went on pretty fine. During the early days I was attacked with several ankle bleeds.

When I was 5 years old I was moved from St.Marthas to St.Johns hospital in Bangalore itself. Because of the inadequate supply of AHF I had to manage with Cryoprecipitate or Plasma for many bleeds. I never faced any major bleeds other than the ankle bleeds. As per the instructions of the Hemophilia society , due attention had to be given to Physiotherapy. I then joined yoga classes. The yoga instructor understood my problems and never actually forced me to do any exercises. In-fact the exercise regime first began with10 minutes of mild stretches per day. Slowly the duration of the exercises increased and the occurrence of the ankle bleeds reduced. If I had not given preference to the exercises on that day probably my present state might have been different. As time passed on the availability of the factors (AHF) became more easy and with regular consultation with doctors and the members of the society even my parents were getting bold and educated about the problem.

I was lucky that I never had a knee bleed for the best part of my school life. But as people say “ALL GREAT THINGS COME TO AN END”. I finally had a knee bleed when I was in 8th standard. The knee bleed was a very major bleed and doctors advised factor supervision for 5 days. The Hemophilia society helped me by providing the necessary factors though there was a slightly stringent supply of factors. It took me nearly 6 months to start walking again. This knee bleed hindered my yoga practice. I had to look for different avenues for exercises. While exercising I had to take care that I don’t strain my knee.

Finally after all the ups and downs I entered the steps of 10th standard. This was the toughest exam I had ever faced thus far in my life. For the whole year ‘my heart was in my mouth’ as I feared the occurrence of a bleed. This story ended with a happy climax. I attended the exam successfully and I secured 88% in the exam. As a token of appreciation I got a scholarship amount of Rs.2500 from the Hemophilia Society. This amount did help me with my further education.

Since my young age I always wanted to be a doctor. Hence I took up PCMB (Physics, Chemistry, Maths, Biology) in PU (pre-university). After nearly 6 months of college, I was diagnosed with Tuberculosis. To my bad luck after the intake of TB medicines for 15 days I developed a reaction to the drugs and got an attack of meningitis. Because of the meningitis attack I was in coma. The doctors advised a Lumbar Puncture to be done. But this process could not have been done on a hemophiliac without adequate factor cover.

Like a silver lining, the Hemophilia society provided me with 1000IU of Factor VIII at a nominal cost considering the financial pressures my family was in. After 1 week I came out of coma and was followed by a period of slow recovery. Since I was not able to go to college and was always staying at home, I was provided with a computer by the society so that I could practice working on it at home.

The doctors advised me to skip PCMB as it would be too stressful. I shifted to “Arts”. I was again provided an amount of Rs.2500 from the society as scholarship.I finally finished my IIPU and it was time to enter the steps of degree. I took BCA (Bachelor of Computer Applications). Now I am in the final semester of the course and the society has helped me in all ways possible to continue with the degree.

Now the society also organizes regular open clinics and physiotherapy camps to help the patients. I have also been a beneficiary of these activities. Today Hemophilia Society of Bangalore also provides facility for free physiotherapy on all days .

I would like to say that it is not only me but many of my hemophiliac brothers who have received help from the society.


1953 I was the happies mother when I saw my baby.He was born a migh tHe was bigand locked the perfect child I thanked god forgiving me such a healthy baby, three hours later he wokeupcrying. The nurse came and took the baby in her arms and felt something wet. The baby was bleeding from the umbilical cord. Doctor was called and she apologized for not tying the cord tightly the incident was forgotten. Ram, my baby, our second child, was always smiling and happy. As months passed by we noticed blue patches appearing all over his body. They would appear and fade away after a few days.  I felt may be the baby had hurt himself or he was handled roughly by people. He was about two when this incident took place. My husband had left his shaving kit on the table. Naughty as he was he took the blade and cut his finger.

It was a small cut but the bleeding would not stop. We sealed it with band-aid, applied ice, haldi, chunam all possible medicines we knew. It was at this point that my husband became worried and took him to the doctor. The blood test report showed that the clotting time was more, but no further information was available. He was given vitamin-k. It did not help. Once in awhile the ankle would swell up or elbow. We would treat him with home remedies thinking it was a sprain.

We had our third child by now. Since there was no family history of hemophilia weknew thingaboutit. Somany of the doctors we met did not know, exceptthey hadheard about it as a Royal disease which was in the Russian Czar Nicholas’ family. My husband kept searching formore information. Aswe were beingtransferred from town totown, he would start all over again going to the best hematologist. It took us nowhere. Fortunately, there was no major bleeding.

1962 - Ram was about 9yrs old. We were in Madras. He was taken to General Hospital, Madras, for more tests. It was impossible to control him. He would be running round the hospital. The doctor would come with batches of medical students, examine him and have a discussion about him. He would feel very important. As I came from a family of seven brothers and two sisters, they tested the blood of my brothers and wanted to know about the family history. As there was no such history it led then nowhere. We were just told that there was something wrong with his blood clotting, but the doctor could not pin point which of the clotting factors were missing. Still there was no mention of the hemophilia.
We were in Bombay. Again another round with the best hematologists. More pricks for the child. Still no clue.

Once when we were traveling by train, he lost one tooth and started to bleed. It was the first time when I felt helpless and panicked. By the time we reached Bombay, a septic abscess had formed above the tooth. Once home, we took him a doctor and gave antibiotics. By now, his little brother and older sister had started to notice that their brother needed a little more care than them. My husband by chance happened to read in a magazine about one Dr. Sujatha Chowdry of Calcutta. She was doing research at the Institute of Tropical Medicine and in blood disorders. Immediately, my husband contacted her and took our son there. She was the first to suspect hemophilia, gave some information about it. But she also could not carry further test for lack of facilities. She advised us to take him to UK, Oxford to Dr. Rosemary Biggs, world renowned hematologist under whom Dr.Sujatha had worked. This was in the year 1964.
Those were the days of acute foreign exchange shortage . Going abroad for medical reasons was unheard of and cost a lot. First time we worried about money. But one does anything for one’s child. My husband started writing to Dr. Rosemary Biggs in Oxford. She gave an early appointment and soon they were I n Oxford UK. Dr. Rosemary was extremely knowledgeable and gracious. It was the first time that a assay test was done on Ram and pinpointed the percentage. It was classical hemophilia and a case of the mutation of the gene. She made a file with lot of information and educated my husband on hemophilia, the inheritance pattern and his future- what kind of problem to expect and what precautions to take. She also told not to give up hope but the most disappointing news was that “there was no cure”. At that point especially in a third world country the only treatment was blood transfusion or plasma transfusion. For smaller bleed and swelling it was icepack. To be careful in growing years, not to get hurt while playing rough sports.
This was accepted with lot of pain and courage. Ram came back very happy, UK returned! Before going to UK he would take part in all sports in school, run races, and even take part in rough sports. May be it was sheer good luck that nothing happened.

1966 - My husband was posted to Washington D, USA. This was godsend. Our hopes were re-kindled. May be medical science was more progressed there, new research and information. In USA first thing we did was to meet D. Stevenson. At this point I must mention this incident. To my surprise I found that my landlady’s son had hemophilia and she started explaining what it was.

 

We were both equally shocked! Who brought us together? She was a guide to me, and a great help when we were there. I got first hand knowledge of how people with hemophilia manage to live. They had a hemophilia chapter, In every town. She used to take me to all the meeting. The parents would discuss their problems, financial, physical and mental. They also needed help.

Some had two children with hemophilia. Most of the children were crippled with joint pains and hemorrhages. Ram was a teenager now. He went with his father to Dr. Rosentahl in New York who was an authority on hemophilia. But strangely the treatment remained the same. He gave a good talk and we looke d positive, hoping for more research.

I had started working for the Red Cross Blood Bank at Washington as a volunteer. The supplier of blood was endless. They were so organized and in a day they easily got 100 donors. By this time cryo precipitate was being experimented. I tried very hard to get some help through Red Cross, India. The restrictions were too many. It was by this time Ram started with plasma infusion. He now understood his limitation and also fears of pain. As parent we felt helpless to see our child going through so much pain. Once when there was a bleed in his knee joint, the swelling became as big as a melon. He had to be hostpitalised and the doctor aspirated the blood for the fear of being septic. They also gave him fresh blood and cryo. He used to go to school on crutches.
It was time to go home to India. We returned to India with knowledge of cryo and with some good contact of friends and doctors. We came to Bangalore and Ram joined college. He wanted to do medicine and become a doctor. He had a major hip bleed and had to at home for two months. Getting plasma was a problem and we have to conserve he cryo we had for major bleed. This was the prime time. Only Govt. hospitals had plasma and we have to explain them why it should be given to him. They would doubt me and only doctor friend with us would help. We got fed up and set up our own transfusion kit and stand with help of a doctor. We got blood from the blood bank and gave to him at home. Getting lyophilized cryo was not easy not only did it cost a lot, it was not available. We had to ask our friends and relatives to pay in dollars and carry it across in cool condition. After one year of medical college he decided to quit for having not attended many classes due to ill health. He graduated in economics and then passed his MBA with flying colors. Bleeds and pain continued off and on. We went on in life unaware of the fact that due to the bleeds irreparable damage was being done to joints.

1977- Ram got a good job in Bangalore with AEG. He had made it. He was a s good or better than so many. By now we had started to store factor, which was now available. Life seemed much better.
S.P. Ramachander, later went on to start the Hemophilia Society- Bangalore Chapter. He passed away in 1999, at the age of 46.

I am exposed to hemophilia because of my experiencies with my brother and cousin We first got to know that Nikhil (my brother) has hemophilia when he was 2 months old.

His caretaker pinched his cheekswith affectionwhich turned blue and had swollen up that was his 1st blue patch and our 1st expirience with his hemophiliaWhen Nikhil was a small boy, he LOVED cycling...He used to cycle in the morning to school, from school, in the afternoon, and evening while playing with his friends... He used to cycle hard and fast. This used to cause his inner thighto bleed, but did not stop him from cycling!!

As GOA is his favorite holiday spot, we decided to celebrate his birthday in GOA...We left for GOA in a train. And as my monkey brother thinks he is superman, he started to jump  from 1  berth to another...he tripped from one berth and hurt his leg,which started to bleed.because of his unbareable pain,we got down from the train, took a taxi from Kadur and came to Bangalore at about midnight. We reached Bangalore at 5 am in the morning and took him to the hospital at that time. That was an unforgettable experience.

Like my naughty brother, I have a monkey cousin whos not less naughty. He too has Hemophilia,which does not stop him from doing ANYTHING..once while playing cricket he was standing next to the batsman while fielding. The batsman swung his bat and hit him on his eye. The whole one side of his face was bruised and the white part of his eye was red, and his eye was swollen. Ahhhhhh.......that would have hurt him.He looked like a mini ghost.

These are some of the experiences that im exposed to with my brother and cousin! And with recalling this I feel that my brother and cousin are the strongest people in my family...!! 

 

Kunal Mehta is a boy of 16 suffering from hemophilia. He became aware of his condition at the age of 7 at which time he was living in Ludhiana, Punjab. Kunal’s is an extremely sad and heart- wrenching story. His mother left shortly after his diagnosis, not being able to handle the pressures and difficulties of raising a child with Hemophilia. His father was an alcoholic. Treatment and medication was not available in Ludhiana and he had to travel 120 kilometers away to Chandigarh to receive treatment. Kunal attended school in Punjab and enjoyed playing sports as a child, but that is no longer possible for him. He constantly suffered from bleeds, the maximum in his left knee. Now, his legs having been affected so, he cannot walk and needs a wheelchair to move around.

Nine months ago Kunal moved to Bangalore to live with his aunt so as to be able to receive treatment and medication quickly. The hemophilia society has been instrumental in providing the support he needed. The society provided medication, factor and various other psycho-social support. He has made a number of friends in the society and has expressed his gratitude towards the help the society has given him. Kunal is planning to attend school in Bangalore. He is still thinking about what he would like to do in future and has expressed an interest in computers.

Deepak, a boy of 7 years, was diagnosed with Hemophilia when he was 8 months old. His parents noticed black patches on his hand and took him to St. Johns hospital. A number of tests were conducted and it was found that he had less than 1% of factor 8. Deepak is the younger of two brothers and the only one with hemophilia in his family. His parents find it difficult to take care of his medical needs at times. His father is a driver and his mother stays at home to take care of Deepak. His mother says that they owe a lot to the society that has helped them in a number of ways. The society has provided them with subsidized medication and has even helped them with Deepak’s school fees when they have not been able to pay it. Deepak has suffered from head bleeds twice and is in immense pain when he gets bleeds, not even being able to sleep at night.
Deepak attends school and does very well in his classes. He’s one of the most active students among his classmates and loves taking part in various activities. He loves sports, but sadly is not allowed to play games due to fear of injury and bleeding. He can exercise, but cannot play games that involves running. At home, Deepak plays games such as badminton with his cousins under the watchful eye of his mother.

Deepak is still a young boy and has a long journey ahead of him. However there is a cheerful spark to him and his enthusiasm is infectious. His mother is devoted to taking care of her child and is doing all she can to support him. Though still very young, Deepak wants to become an engineer when he grows up. We wish him all the very best.
This is the story of Manjunath, a boy in whom there lives a very rare spirit and enthusiasm for life. Manjunath grew up in Mandya, in a lower-middle class family, both parents being uneducated. He was diagnosed with hemophilia only when he was in the second standard. Even then, not having any exposure or information about this disease, his family was not aware of the significance of Hemophilia. Having no idea about treatments, all they could do was consult a local doctor when Manjunath suffered from bleeds and they were advised to use hot water bottles (the wrong treatment for persons with hemophilia – normally, ice is used). They were not aware of the existence of societies that helped patients with medication and other socio-economic support.
Manjunath and his family soon migrated to Bangalore where he attended school. His mother was a sweeper at a Corporation, doing her best to earn enough to support her son and fund his education. Manjunath continued to suffer from bleeds and endured severe pain, and was only able to get plasma from Bangalore Central Hospital.

It was when he was in the tenth grade, that someone at Maruthi Medicals advised him to meet with Mr. Vikas at the Hemophilia society. He arrived at the society, alone and hungry, seeking the help he needed so much. Mrs. Ranjana Ramchander immediately took him under the society’s wing and the society has since changed his life. Manjunath pursued his Diploma in Mechanical Engineering with the help of a scholarship granted by the society. However, in his first year, Manjunath suffered from a tongue bleed that took 2-3 months to stop. It is difficult for one to imagine that something as simple as biting one’s tongue can cause so much pain and suffering for a person with hemophilia.

Manjunath graduated in 2007 and started working for Tyco Electronics as a C&C Sparking machine operator. However, this was sadly interrupted by a stomach bleed.
While talking to Manjunath, he seemed a very optimistic person, full of enthusiasm for anything he did. He was a good student but sometimes felt bad about his hemophilia. He had many sleepless nights due to pain and did not get not much support from his family. He expressed some sadness over the restrictions he had as a child and has even now. He enjoyed playing cricket, but due to fear of injury couldn’t pursue it as he would have liked to. He has enormous respect and regard for the hemophilia society that has helped him deal with his situation. The society has organized youth groups where he has been able to meet and befriend fellow patients. These groups conduct personality development programs and organize various recreational activities for the patients. Manjunath relates the time when the society organized a trip for a group of patients to Chinnaswamy stadium where he had the opportunity to meet Rahul Dravid and Anil Kumble. The excitement I saw in his eyes was one of such happiness and innocence.

Manjunath is keen to give back to the society that has helped him at every stage and has decided to dedicate his life to the society and the noble work it does.

He has recently got a job in Dubai with the Emirates Trading Agency with a handsome salary. He’s thrilled about this opportunity and we wish him all the very best with his endeavours. Manjunath is truly an inspiring example for all of us and in particular the many who suffer from hemophilia. We hope that they draw some inspiration from Manjunath’s story and continue to pursue their ambitions despite this disease.

Manjunath was born into a family with a history of hemophilia, his mother and sister being carriers. When Manjunath was 4 months old, he fell ill and he was taken to a hospital where he was given an injection and sent home. However, the bleeding did not stop and he went back to the hospital. He was sent to St.John’s hospital and a number of tests were conducted. It was found that he had a deficiency of factor 8.

When he was in the fourth standard, Manjunath suffered from a serious leg bleed. He was directed to the Hemophilia Society where he was provided with the necessary medication and factor. It took 6 months for the bleeding to stop and his leg had folded and he couldn’t straighten it. Further tests had to be conducted.

Manjunath was quite accustomed to regular visits to the hospital, endless tests and he had to suffer from a number of bleeds in his hands and joints. He had stopped attending school. His school had shifted 3-4 kilometers away from his village and the teachers did not understand the seriousness or consequences of hemophilia, often beating students. Therefore, Manjunath was forced to leave school as a result of the combination of his hemophilia and financial situation.

His mother and sister have been ill treated by their families due to the fact that they are carriers of this disease. We must become aware of such discrimination and do all we can to stop it. People need to become aware of this disease and the means by which one can get treatment and help. His mother slipped into a depression due to the stress of Manjunath’s hemophilia and the financial difficulty. She was treated for 3 months and slowly came out of it.

When Manjunath was 17 years old, he had some shoulder pain and joint aches. He came to the society for help and was provided with medication and other necessary help. However, his sister’s wedding was now being arranged and his family was facing financial trouble. He couldn’t afford to travel to the society everyday for treatment. He presented his problem to the society which then arranged for his transportation costs so that he would be able to receive the treatment he needed.

Manjunath’s sister’s son also has hemophilia. She is pregnant again and fortunately, tests indicate that this child will be born normal.
When Manjunath’s financial situation went from bad to worse, he approached the society, which gave him a job and a means to get by. He helps maintain records, does posting, filing and various other kinds of work at the society. The society has provided him with free medication, factor and physiotherapy in addition to psycho-social support. Manjunath has tried to live as normal a life as possible and the society has provided him with immeasurable help, guiding and advising him at each step. He himself says that he would not be here today without the society. Manjunath, like many others has lived through the hardships of hemophilia. Yet, he has faced them bravely and is living a normal life with optimism and enthusiasm.