23th oct 2018
There are no exact statistics but in Portugal we might be between 1060 and 5300 suffering from primary lymphedema. Becoming one of the people linked to this cause has been a slow but steady process, beginning in 2014 with the creation of my blog L de linfa.
Since I was young I have always been involved in the voluntary sector and health has always been important in this. However, in my professional career as a civil servant working in local government, areas like tourism, culture, organisation and management have also been part of my journey. I have worked on various teams and coordinated several domestic and international projects. Currently I am working in the area of Finance (Incoming).
We only grow and develop in our contact with others and as a student I was a member of a Christian group. Later, I helped to found APOGEP (Portuguese Project Management Association) and more recently ANDLinfa|National Association of Suffers of Lympahitic Disorders.
It's never too late, " Above all else, guard your heart, for it is the wellspring of life" (Proverbs 4:23)
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.
tradução: Nigel Thomas