Together again, albeit elsewhere

ČSH

Many members and supporters of the association have grown accustomed to meeting each autumn at the "Together about Haemophilia" event. In recent years, everything took place at the Jezerka Hotel in Eastern Bohemia, but variety is the spice of life. In cooperation with long-standing partner Shire (formerly Baxalta, before that Baxter), CSH prepared a programme at a hotel by the Aquacentre in Čestlice – just outside Prague, right by the D1 motorway. The programme itself can hardly be reinvented; it is more about what fills the familiar framework. There is always an effort at renewal, but the foundation remains – delivering the latest information needed by everyone, keeping them up to date with developments and the outlook for care, and last but not least, answering as many questions as possible from participants.

The lineup of professionals therefore remained virtually unchanged. Haematologists Peter Salaj from UHKT Prague, Jan Blatný from the children's hospital in Brno, orthopaedist Petr Teyssler, and physiotherapist Marie Katzerová remain the core, as does social affairs specialist Marcela Štáfová. The association always tries to complement this team with someone new; this time, that role was filled by dentist Eva Zapletalová, cardiologist Petra Vysočanová and psychologist Milan Pilát. The first aid course led by paramedic specialist Aleš Vosáhlo attracted great interest from participants, and those who wanted to get their bodies moving had the opportunity during an instructional lesson in Nordic Walking pole technique. The lively discussion after each presentation and the extensive panel debate at the end are testament to the fact that the programme hit the mark.

The association Council thus received confirmation that these efforts are meeting with success and that they need to continue. Everyone benefits from such an occasion, including parents of small children, whose little ones are looked after throughout the day by carers in a sort of improvised mini-nursery.

Jan Blatný brought a statistical overview of the prevalence of haemophilia in our country; Peter Salaj chose an unconventional approach and did not deliver a lecture. Right at the outset, he suggested that it would be better to discuss together whatever was currently on the participants' minds – and there was truly more than enough to talk about.

Heart matters connected with haemophilia were also discussed – both literally and figuratively. It emerged that the haemophilia population, which unlike in pre-war times now lives to the same age as the general population, is also now reaching the age of heart disease and should observe certain principles. And also that the growing generation should develop into valuable and capable people, for which they need the support of their families above all.

However, the educational sessions occupied only part of the overall two-and-a-half-day programme. It was primarily about meeting one another, so most of those present were warmly greeting each other upon arrival. They knew each other from before, and at the end they promised that – if not sooner – they would meet again soon. And the opportunity to enjoy the renowned Aquacentre with all its attractions was also not overlooked.

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