A Word to Our Own Ranks

ČSH

Mr Bedřich Smrčka, a participant in the spring gathering in Lednice, wrote to us. He asked that we convey his words to the wider public. Dear colleagues, I congratulate you on reading these lines. Not because you will learn something revolutionary, but your attention is proof that you take an interest in life with haemophilia. Some of us are better off physically, others are not. But we all know that tomorrow things could be completely different.

For our bodies to function as well as possible, it is good to have people around us who will help with that. Family, an orthopaedist, a physiotherapist. Even if this team were the best there is, it cannot help us -- even if we had all our joints replaced -- unless we have the right approach to haemophilia. After all, it is not just about living or surviving. Within our current capabilities, it is about being as little of a burden to those around us as possible, ideally self-sufficient, and at best useful.

I had the opportunity to meet a person with haemophilia who, in my eyes, was not doing very well. When asked why he was not doing anything about it, he replied that he could not, that he had to take care of his two small children. But by not keeping himself in shape, he is not doing them much of a favour. I even know a haemophilia patient (about fifty years old) who has never in his life had a single bleed treated. Truly like in the Middle Ages. The reason was that "nothing is wrong with him." In reality, all his joints are so devastated that it is a problem for him to make any transfer (I do not mean walking), to feed himself... That is really no life. (If he reads these lines, he probably will not speak to me again.)

An indicator of the right approach to one's health can be seen in haemophilia patients who attend reconditioning stays designed specifically for them. Naturally, after such a short stay, a haemophilia patient cannot be fully exercised or even cured. These stays are organised mainly so that everyone has the opportunity to become aware of their proper approach to the disease, receive advice on what to do next, and last but not least, it is about camaraderie.

That is why I would like to thank, on behalf of everyone who was in Lednice again this year, Michal Skořepa for organising this wonderful event.

Bedřich Smrčka

You can read more about this year's stay in Lednice here, or in the Our Events section.