Not many of us know the term Lymphedema. This article is an attempt to start a conversation with this manageable, yet life altering disease, that I have survived and learnt to win over, everyday! Here is to Lymphedema awareness:
How I met Lymphedema
I was all of 22 years when this started. After graduating from my Engineering college, I started my new job at a reknowned software organization. The humongous Mysore Training Center and new people, along with the newer technologies, were exciting and a little bit daunting. After a few days, it was my roommate who noticed my swollen ankle. I had brushed it off as a side effect of excess walking or cycling. When we consulted the campus doctor, even the doctor agreed. He asked me to do hot water treatment. The swelling even went away after 2-3 days. But, it returned after three months. I continued the hot water treatment. This had happened few times before I noticed that the swelling had started to spread over to my calf, and eventually till my knee. In the meantime, my life had taken usual turns. Change of jobs, change of city, and change of lifestyle all were happening very fast, even as my legs held me back. The painful swelling was bothering me and affecting my life a lot.
Meeting Doctors from all corners!
I consulted the best doctors in town. After a battery of tests, all I heard was everything was all right with me! Different doctors provided different guesstimated diagnoses. Someone told me I had Filaria, gave me a 21-day medicine course without any shred of evidence! A hapless patient by then, I swallowed the pills. Needless to say, it hardly had any effect.
Life happened. I was expecting my baby. My office was on the 3rd floor, and I had to do countless walks up and down, with my swollen feet and swollen belly!
Finally unable to bear anymore, with my infant baby in tow, I traveled to Mumbai for treatment, based on the advice of a relative. There, I underwent all kinds of tests, and one doctor finally introduced me to Lymphedema. To confirm the diagnosis, there were more tests in another private hospital. They found partial blockage in the lymphatic system of my leg.
While I was relieved at a diagnosis, it crushed me that there were no cures or treatments for this disease. One can only manage it lifelong.
Living with a disease without any cure
A few months later when we moved to Delhi, someone suggested that I try AIIMS. With the current doctor-patient ratio in India, it was harrowing to get an appointment with a specialist. They told me nothing new, but it was there I got introduced to Mrs. Arunrekha Gogia. She is a consultant and specializes in supporting lymphedema patients. She supports her husband who is a vascular surgeon with AIIMS.
The Support Group Blessing
Through the support group, I met many others who are going through the same journey. There we shared stories, heard advice and connected with each other. We stayed connected through IM groups and Social Media. We send our test results to Dr. Gogia, or inform her if pain or swelling increases. Based on her experience and judgment she fast tracks our appointment with the doctor.
But one of her primary goals is spreading awareness of breast cancer treatment and lymphedema. Doctors often do not educate the breast cancer patients on how their treatment can cause lymphedema. This leads to dual suffering even when their cancer goes into remission.
It was with the help of this support group that I gained my courage and assurance. And now I am doing my bit to spread awareness. Recently I interacted with a pregnant woman who is also suffering from lymphedema.
Some info about the disease:
l. Causes Swelling
2. Makes one prone to infection and body immunity decreases
3. Can cause fibrosis and tumors
If you manage using proper methods and with diligence and care, the harm caused by Lymphedema can be minimized and delayed.
Some popular methods of Management:
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.
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.
Millions in India are not aware of what they are going through. The disease mostly affects women. 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 treatments within reach. They have to travel to the major cities, even if they can bear the cost, to get the cure.
Lymphedema Awareness: Each one, Teach one
The picture is gloomy but can be managed through 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 made 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.