The Sunshine Girl
(c) Dr. Rajas Deshpande
The beautiful 14 year old girl was almost motionless. Her body was completely stiff, eyes fixed in one position, she could not move at all. Any attempt to speak or move would send her entire body in violent spasms. She could not even cry for the fear of this painful stiffness, but her pillow was wet with the tears rolling down her eyes. Her parents had wheeled her in on a stretcher. They had landed just yesterday in Mumbai, travelling from Iraq with her. Her father was illiterate, while the mother was a science graduate from Baghdad University. While internally torn with the condition of her daughter, the mother very calmly and peacefully explained me the condition of her daughter Khazan.
On the day of school annual function just five months ago, Khazan’s teachers in Iraq noticed that she was limping while dancing on the stage. They told her mother about this. Khazan was taken to a Neurologist there, who found that she had some neurological signs, with brown coloured rings in her eyes. This ring called a ‘KF’ring is usually found in patients who have a rare disease called ‘Wilson’s Disease’. Due to a fault in Liver, copper cannot be excreted out of body, it accumulates in the liver and in the blood, rising to high, toxic levels. This excess copper in the blood then starts damaging every organ in the body, but first it causes severe damage in the brain and eyes. If not treated, the patient becomes disabled soon and dies. The biggest problem is that many patients may worsen with treatment in the initial phase, with medicines which act fast. The cheaper medicine (Zinc) which does not cause such worsening, is too slow to act, it takes months. (c) Dr. Rajas Deshpande. Khazan was started with the first medicine in Iraq, but unfortunately, she became paralysed due to the side effects of the medicine. The Neurologist in Iraq started with the second, extremely costly drug. Her parents sold off their land, business and even home, and shifted to a rental small house to afford this medicine that had to be imported from USA. As fate would have it, Khazan reacted adversely to this too and further worsened. She became completely paralysed, could not eat or speak, and was then advised the last option, the curative treatment for this disease: Liver transplant. (c) Dr. Rajas Deshpande
They applied for loans from some charity organisations, and landed in India for Liver trasnsplantation. “We were told that the doctors in India are the best in the world, and the cost of treatment is lowest in India. So we decided to come here” her mother told. Indeed, the cost of medical as well as surgical treatment in India is lesser than half compared to the developed world. For simple appointments with specialists, the waiting list in the developed world exceeds weeks to months, and surgical appointments take years. Once, in my childhood, one of my uncles gave me some dessert, like everyday, which I didn’t care to finish. My aunt asked me with surprise: “Why don’t you eat such a delicious dessert?”. My uncle immediately said “Because he gets it so easily. Ask those who don’t get it, they will love it”.
We found that Khazan was almost skin and bones, dehydrated, and anemic. She had developed many Parkinson-like symptoms and some psychosis. I explained her condition and told her mother: that she was semi-critical, that I wanted to start with the cheaper, third medicine and give her supportive care, but it would take a long time, I could not guarantee anything. Her mother told me via the Arabic interpreter Mr. Tabrez: “Doctor, we do not want surgery for her. Do what you would have done for your own daughter. We will close our eyes and do whatever you say. We will hope she improves, but we understand you cannot guarantee anything”. Now the onus was upon me, the responsibility was mine. We started treatment. Khazan’s graduate mother knew more about Wilson’s disease than many medical students, yet she never came across as arrogant or argumentative. She politely asked doubts. A good doctor grows with every patient. (c) Dr. Rajas Deshpande
My students started helping out the family, making Khazan feel at home. Love and compassion for the patient enhances the effects of all medicines in most cases. Add the trust and willpower of the patient, and you usually have a winning prescription. From the shadows of a near-certain death, Khazan’s body and soul started to awaken to the sunlight called life. She gradually started speaking, drinking water, and in a few weeks, eating small morsels. They had to return to Iraq, and we communicated via video chats. They returned twice to India for reassessment and change in treatment.
A few months after their last visit, I received a letter. It was written in English, by Khazan. She had joined college now, and wrote that she wanted to become a doctor like me. Her mother had added in Arabic: “My girl is the sunshine of my life, thank you for bringing her back from the claws of death”. I had received my reward. Khazan is doing very well now since last three years, with God’s grace. Of course I did not forget to remind her that most of the credit of her recovery was to the unparallelled grit and efforts of her mother.
Magical, Near-supernatural, Miraculous recoveries happen every day in India. Patients, young and old, with almost nil chances of survival, walk home smiling every day, in almost every Indian town, even in the most rural areas, thanks to the efforts of thousands of doctors working 24/7. These doctors are never appreciated or rewarded. This post is dedicated to those messiahs of Indian Medicine.
(c) Dr. Rajas Deshpande
This story is real. Many doctor colleagues and physiotherapy students have helped me treat this patient over years. Wilson’s Disease can be completely cured, there are many experts working on tis in India.
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