Who I am and what my aims are

Manuela
june 2015
No, I don’t work in the health service. Let’s just say that I’m one of the many users of the letter “L for lymph”. I have lymphatic hypoplasia and I have created this blog, which I have been thinking about for a long time, because I think it is important to talk openly about such issues. I think that this is the only way for us to understand completely that we are not alone, and therefore we shouldn’t see ourselves as different. The primary lymphedema I have in my legs was not immediately apparent. But as I got older, some time in my twenties, it became more and more obvious, and it brought other complications. You might wonder whether I went straight to the doctor or not. The truth is that I was born in a country where lymph-related questions are not widely known, and when they are occasionally mentioned, they are considered only from the point of view of a person’s appearance. I went to the doctor, in fact I went to a lot of doctors until I found a suitable response to my swollen legs. I don’t intend to create a blog focussing exclusively on primary lymphoedema, nor do I want it to become a place for complaints, or indeed too technical. My experience of hospitals has given me the privilege of meeting many other people who bear the “L word“. That’s why I would like all of us who suffer from pathologies of the lymphatic system and workers in the various support services to be able to talk - sharing our experiences and knowledge - so that we can all find our own answers and a way forward and thus create a good mutual support network.
It’s probable that this sharing will help us to form groups within the main group. To be honest, I don’t know what will happen, but I feel the urgent need to start, move forward, stop if we have to and start again if need be. Finally I would like to share one of the funniest experiences where I first felt the need to “pull back the curtains”, as it were. Quite a few years ago, I was standing at a bus stop when a child began to stare at my feet. With a lively and intrigued expression, he stuck out his finger and slowly stretched his hand towards my foot. He touched it, as if he was testing whether it was real or not. His mother blushed and was very apologetic but all I could do was laugh and try to explain to the child why my feet were like “little pillows”.
With their innocence and honesty, children often make us take another look at reality and think more deeply about it. That is my aim here: I’d like us to be able to talk honestly about the letter L for lymph.
Manuela J
jan 2014
l.de.linfa@gmail.com

tradução: Nigel Thomas
june 2015