It's all about the Blood

Sunday, May 09, 2010 Mushal Noor 6 Comments Category :

Dr Yasmin Rashid, Professor of Obs and Gynae, was taking our morning lecture on 7th May. The next day, 8th May, was International Thalassaemia Day, so, quite appropriately, her lecture was on beta-thalassaemia, the type of the disease most prevalent in Pakistan.

Just a little detail for orientation: Thalassaemia major is an autosomal recessive disorder, with no treatment except repeated blood transfusions, iron chelation therapy, and splenectomy or bone marrow transplant, if possible. The main focus is on prevention, which centers on creating awareness about the disease, screening the population for carriers (if two carriers get married, there is a 25% chance, in each pregnancy, of the child being affected by thalassaemia), and pre-natal diagnosis, with the option of aborting the fetus if it is found to have thalassaemia.

Prof Yasmin, also the General Secretary of the Thalassaemia Society of Pakistan, spoke quite eloquently and forcefully about the plight of a thalassaemic patient. Many go undiagnosed, and die without knowing what ails them, or that it can be treated. Some are too poor to afford the treatment. And even for those who can, it is a life of misery and difficulty: transfusions every other week, iron chelation via subcutaneous infusions hooked up to the patient 8 hours a day, 5 days a week. Many require splenectomies, others have to battle infections as their bodies gradually break down and give way. Many patients dont make it beyond their teens. A short life, and one of toil and turmoil.

What struck me was the way the Thalassaemia Society of Pakistan seemed to be a protector for these unfortunate people; those who, through a twist of fate, the betrayal of their own genes, a failure of their own systems, had been sentenced to a life of affliction. Like a hen spreading its wings over its chicks. Like Moses for the Israelites. In its own words: 'The Thalassaemia Society of Pakistan is a torchbearer in the lives of Thalassaemic patients. It is a streak of hope for the ailing souls of young children who are doomed forever to pain and suffering.'

Ma'am told us about a woman from Gujrat, who had lost three grandchildren to thalassaemia. She was entirely uneducated, but was now instrumental in spreading awareness about thalassaemia in her extended family. She was apparently quite involved in the rishta-business, and according to Prof Yasmin, would often come to her, saying about a particular pair: 'Ainaan da rishta karna ay Dr Saab, par pehlaan ainaan da 'tesht' karo!'

Then, there was that singularly unique, even slightly mad idea: thalassaemic patients, already anaemic and weak, walking to the K2 base camp. Five thalassaemic kids, under the Society's care and guidance, went through a year-long program to strengthen and prepare them for the arduous walk. The banner they held read: 'If looked after properly, we can do anything in the world.' A symbolic walk: five young people battling the odds to show the world that, despite their handicap, they could do wonders. Trying to make their voice heard amidst the din. Trying to be seen in the glare. Utterly quixotic, you'd say. Things like this only happen in movies, or glimmer on the pages of sentimental inspirational books.

But listening to Dr Yasmin about how she, and many others, were working to make a difference in people's lives, made me think for a moment, that those clichés may have some truth in them: miracles do happen, dreams do come true and it is possible to overcome the odds. The website of the Thalassaemia Society of Pakistan http://www.thalassaemia.org.pk/ has an Achievements page. Take a look at the captions:

Mr Amin: 1st Thalassaemic patient who became a father in Pakistan

Ms. Rida Fatima: 2nd position in O-levels

Ms Laiba Mukhter: 3rd position in SSC

What might be ordinary things for us, are great feats for them. Like living long enough to be a father. Or being healthy enough to study and get good grades. These are their miracles. These are their dreams. And the Society, their champion, looks proudly on the acheivements of the children it looks after and nurtures.

It is possible to make a difference in people's lives; Prof Yasmin's lecture reminded me of this fact. And even though it might be uncool to dream, or naïve to think of a better world, these are little examples which help you keep the faith. Needn't look too far: simply a group of dedicated doctors who have chosen a cause to champion, and have brought joy and light to so many families.

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6 comments

  1. Bravo Mushal!A very inspiring post:)

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  2. great one! This really got me thinking...we guys are LUCKY.and still not thankful enuf.and a bit too selfish too.I really never bothered about thalasemia day b4 ur post.so thnx!

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  3. somehow...the word thalassemia always reminds of the movie, 'a walk to remember'...
    but yeah this society seems to be serving alot of grieved ppl...its a wonder that such feats never cross the eyes of media..! which is forever harping on about the unemotional and negligent doctors...!

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  4. this post reminds me of my experience at bls... the rescue1122 team was soooo dedicated n passionate2 do good..they had such a purity of spirit... yep stuff like this gives u faith :)

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