LYMPHEDEMA - A patient’s perspective in India Neha Vinayak,
[email protected] When I started my journey with Lymphedema, I was a 22 year old girl, eager to put all that I had learnt in my professional course, into practise in my new job. Suddenly one night I saw a swollen ankle and rushed to the doctor available in the campus. Little did I know that this was going to be a life changer for me and not in a good way!! The implications of this frequent swelling struck me around 2 years later when it refused to subside given any amount of medication or care. I was staying alone in the office accommodation in Patna, Bihar and there is not one doctor I was recommended by well-wishers, whom I did not visit, given that I had been in the city for less than a year now. I underwent a series of tests but the result was not what I wanted – a pin-point diagnosis of what had happened to me. I was not afraid of what would come up in the tests, I was prepared for the worst result. Coz a worse result is better than no result and groping in the darkness. But alas, no doctors had any answers to my condition!! I wondered what had happened to me that no one knew of. With each passing day, the swelling was spreading to the foot, towards the toes and upwards in the leg. So was the pain. But I was determined to find out the answer. I travelled to Mumbai, where I was assisted by my extended family to meet knowledgeable doctors in this field. They examined my foot and based on the various medical tests which had been conducted, suspected a condition called “Lymphedema”. That’s when I first heard the term. I was prescribed a test to diagnose the same and it was conducted only in one particular hospital there. Happy that I was headed towards a diagnosis, I underwent the test and the result was positive – a partial blockage in my lymphatic system. The doctors advised the use of Graded Compression Stockings and elevation of the leg as much as possible. But whether it could be cured, they were not sure. It could last a lifetime or the fluid could find an alternate path to travel.
Back at my hometown, Kharagpur, West Bengal, I also consulted homeopathic doctors. I know many people do not trust homeopathy medicine, but it has worked wonders for me and I trust its “slow yet reliable” power. But with lymphedema, even homeopathy was not able to provide any relief.
When I moved to Delhi, well-wishers suggested me to visit renowned doctors who could have answers to my condition. I was hopeful!! When I visited the doctor’s OPD, I did not know whether to be happy or sad. There were others with similar conditions and some even worse. On further association with the doctors there, I realised that there are many others who are suffering from Lymphedema. Some primary by birth or appearing later, as in my case. Some secondary due to some surgery or infection.
Here, I was taught the 3-step treatment methodology for Lymphedema. -
Manual Lymphatic drainage, even if done by yourself, provides relief. It helps the collected fluid to move up the channel and away from the accumulation.
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Compression Therapy involves the usage of a pneumatic compression pump. It may be 4/8/12 chambered and aims at providing graded compression to propel the accumulated lymph fluid upwards in the body. Compression Bandage/ Stockings helps to maintain and contain the swelling, once it has been reduced using the above two steps. Just like we brush our teeth and eat our food daily, this has to be made as part of the daily routine and for effectiveness, it should be used throughout the day.
Diligent use of the treatment methods along with daily exercises can help keep Lymphedema under control and prevent it from spreading. Just like cancer and other diseases, Lymphedema also has different stages. As we advance up the stage ladder (if treatment is not started timely), treatment becomes more difficult and the effects it leaves on the body are irreversible. Lymphedema has certain side effects. Lymphatics help in functioning of the body immune system. When the flow of lymph fluid is affected, the immune system is hit. The body is prone to infection and needs very special care. It also affects everyday life. I cannot wear certain dresses of my choice, no high heels, sandals don’t fit on my affected foot. I can’t stand for long. I have to keep my foot elevated while sitting, to keep away the swelling and resulting pain. But, I do not complain. I am determined not to let Lymphedema control my life.
There are millions in India who are not aware of what they are going through. Most of the affected being females. People in the villages feel shy to disclose their condition to others, fearing the social stigma they will have to face. They fear their daughters may not be married off if the groom knows of this condition, and rightly so. And people who come out of their fear, do not find accurate and effective treatment within reach. They to travel to big cities to get the cure. The picture is gloomy but can be made bright by awareness. Even if doctors do not know the treatment methodology, they should at least be aware and guide patients to the correct place to avail treatment. Affordable treatment should be available to all with latest research advances As little as we can do on our part, let us try to understand this condition “Lymphedema” and spread knowledge to people we know. “EACH ONE TEACH ONE“ is what we are aiming at.
