One of the reasons why I’m here is an assumption that because I have severe haemophilia and the people we are meeting have severe haemophilia we ought to have some experience in common. After the first couple of days of meeting Indian haemophiliacs I was beginning to think that the assumption of any kind of common ground was hopelessly naïve. I’m twenty-eight and I can walk unaided and without limping (rare in India), unlike many Indian (and UK) haemophiliacs I don’t l
ive with chronic pain, I have a career that is not limited by my condition and I am not in poverty.
Yesterday on our final visit to a family, I found something. Sanjeev (not his real name) lives in a small apartment in East Delhi with his mother and father. He is fifteen years old, and from the moment we arrived he didn’t stop grinning. Eager to try out his English, he introduced himself and started to chat away – smiling ear to ear the whole time. After lots of chair arranging, and shepherding of non-essential personnel into the second little room in the apartment, I asked him how haemophilia effects his life. He looked at me, looked round, looked down at the floor. Then he looked at the camera and said “haemophilia is a severe danger problem.” As he said the word “danger” the grin fell off the bottom of his face, he stopped, swallowed looked hard at the floor for a long time, then looked up and said “this problem that has come into my life is very dangerous.”
I recognized exactly what was going through his mind – it was fear. I knew because I recognize it in my own relationship to haemophilia. That sense you carry around that you are never very far from harm, that if you make a bad choice, or are just unlucky, something can happen to you which is irrecoverably crippling. The difference between Sanjeev and me is that I worry backed up by 12000 units a week of prophylactic factor. Sanjeev’s family can rarely afford Factor VIII, and to buy it, even in tiny quantities, is a major financial outlay. If I fall down in the street, it’s a painful inconvenience, if he falls down in the street, his future may be forfeit. Sanjeev’s fear is justifiably far more acute than mine, but it is the same fear – and that’s one thing that I have in common with Indian haemophiliacs.
ive with chronic pain, I have a career that is not limited by my condition and I am not in poverty.Yesterday on our final visit to a family, I found something. Sanjeev (not his real name) lives in a small apartment in East Delhi with his mother and father. He is fifteen years old, and from the moment we arrived he didn’t stop grinning. Eager to try out his English, he introduced himself and started to chat away – smiling ear to ear the whole time. After lots of chair arranging, and shepherding of non-essential personnel into the second little room in the apartment, I asked him how haemophilia effects his life. He looked at me, looked round, looked down at the floor. Then he looked at the camera and said “haemophilia is a severe danger problem.” As he said the word “danger” the grin fell off the bottom of his face, he stopped, swallowed looked hard at the floor for a long time, then looked up and said “this problem that has come into my life is very dangerous.”
I recognized exactly what was going through his mind – it was fear. I knew because I recognize it in my own relationship to haemophilia. That sense you carry around that you are never very far from harm, that if you make a bad choice, or are just unlucky, something can happen to you which is irrecoverably crippling. The difference between Sanjeev and me is that I worry backed up by 12000 units a week of prophylactic factor. Sanjeev’s family can rarely afford Factor VIII, and to buy it, even in tiny quantities, is a major financial outlay. If I fall down in the street, it’s a painful inconvenience, if he falls down in the street, his future may be forfeit. Sanjeev’s fear is justifiably far more acute than mine, but it is the same fear – and that’s one thing that I have in common with Indian haemophiliacs.
4 comments:
What do you think the children you are meeting think about meeting someone from the west with such a different experience of living with haemophilia day to day?
hmmm... good question. Will have a ponder and try to write something about it tomorrow...
Dear Tom,
I am a paediatrician from India and I volunteer for a state branch of haemophilia federation. I found your blog interesting. We currently are actively working on setting up a unique dedicated comprehensive haemophilia care centre in south India. It is an uphill task and we are managing against many obstacles. Haemophilia care in India is taken care of by non governmental organization, as you are aware of. I seek professional ties with you, which could help us set up India's first Comprehensive care centre.
I am eagerly waiting for you response.
Dr.Rao
Dear Dr Rao,
Thank you for your message, and apologies for the slow response. I've been away.
I'm afraid I'm just a volunteer myself, and so I can't be of any direct help.
But, I suggest you contact the Haemophilia Society UK. The person currently most involved with our links to India is Hong Sung. Hong@haemophilia.org.uk
He should be able to suggest ways to proceed with this project and may be able to provide contacts at the UK's comprehensive care centres.
Sorry I can't be more help, but I'd be very interested to be kept informed of your progress and I wish you the very best of luck with the comprehensive care centre.
Tom
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