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Tatiana's Lymphedema Story

My name is Tatiana, 28, from Russia. My lymphedema started at 26, it affects my whole right leg from thigh to foot. Since the lymphedema began, my youthful life stopped. Why? Because now I have to adjust all my activities, my whole lifestyle to the disease. Doctors never talk about how hard it is to wear these compressions all day, every day. Half of the year even in Russia it is pretty warm. All summer in the compression I feel unbearably hot. When people call me out, I have to refuse, because in the compression I can’t keep good company for them in all their activities. And if I don’t wear the compression, I will get huge swells, so there is no choice. The disease leads to isolation since I have to literally count every step I make because the swelling progresses throughout the day. What is very sad is that people generally don’t understand the individual with lymphedema and make the wrong conclusions. Doctors say they have therapies for this. They have NOTHING. Compressions and lymph drainage are ineffective in terms that they do not give any remission. These measures being the only options in our century of digital technologies and medical progress look like something from Medieval times. This disease is very poorly understood even by the research community (the causes are unknown as well as there are no proper tools to visualize lymph system). Finding the answers requires research, but frustratingly very few specialists research into lymphedema. The fact is that the severity of the disease is strongly underestimated. Lymphedema has the heaviest impact on one’s lifestyle plus its psychological impact is huge. Living with one part of the body significantly bigger than the other is very embarrassing. I set all my hopes on researchers that some day (and hope so much that by that time I will be still young) some cure will be found from this lifelong torture of lymph drainage and compression, which doctors call therapies.