News

5th Gala Evening of the Czech Hemophilia Society and Hemojunior

Allow us to warmly invite you on behalf of both organizations to the 5th Gala Evening of the Czech Hemophilia Society and Hemojunior, which will take place on Saturday, January 11, 2020, at the Alcron Hotel in Prague. You can look forward not only to a pleasant evening with friends from both organizations and from among sponsors and physicians, but also to good refreshments, a rich raffle, and perhaps some surprises. The programme begins at 18:00, with admission to the hall from 17:15. Teri Stepanova will play for dancing and listening and will also host the evening. We strongly emphasize that formal dress is required to enter the hotel.

Jihlava Intergenerational Meeting — Not Just About News in Hemophilia Treatment

In November, the seventh meeting of the Czech Hemophilia Society and Hemojunior took place at the EA Business Hotel in Jihlava. The pleasant premises provided a suitable venue for gaining new enriching knowledge and social gatherings for exchanging experiences. The professional programme met our expectations as always — both the Friday lecture on lower limb axis correction by orthopaedist Petr Teyssler, accompanied by numerous photographs, and the personal experiences of young hemophilia patient Lovre Šuta with the myPKFIT mobile application received positive feedback. The varied programme continued with Saturday's thought-provoking lecture by psychologist Petra Bučková and physiotherapist Marie Katzerová on pain in coagulation disorders, the witty and encouraging talk by another psychologist David Bystrický, and last but not least, new information on hemophilia treatment options from haematologist Jan Blatný.

Hemophilia in Jihlava Again This Year

We would like to inform members of the Czech Hemophilia Society and Hemojunior that the next intergenerational meeting of people with hemophilia and their loved ones will take place in November, again in Jihlava. For several years, both associations have been organising generational meetings aimed at helping not only members, but everyone dealing with hemophilia and von Willebrand disease, to navigate all related issues. And also their partners, parents, friends -- in short, anyone who is interested. Everything is being prepared for 15-17 November at the EA Business Hotel. The main programme is traditionally scheduled for Saturday, but already on Friday evening we will be able to learn a number of new developments in the fields of orthopaedics and haematology. Conference rooms, salons for group and individual meetings, demonstrations of individual rehabilitation, proper factor administration and vein care, and many other interesting activities will be available. Professional childcare will be provided for small children if needed.

We Love Having Guests

Yes, we do, and we also immodestly believe that the Czech Hemophilia Society can be an excellent host. This belief is justified by the memory of 2012, when Prague became the main European city for people with hemophilia. It hosted the regular conference, a flagship event of the European Haemophilia Consortium, and for a long time afterwards, representatives of the society could hear very positive feedback on the international stage. But that is the past, and one cannot live on the past alone — we must look to the future. For instance — why couldn't the city of a hundred spires also become the world capital of hemophilia? That would require organizing the WFH World Congress. The nearest available date is 2024, and that is precisely what the society's plan is targeting.

Adult Rehabilitation Retreat in Rokytnice, Orlické Hory

During the week from 18 to 25 May, another rehabilitation retreat for adult haemophilia patients took place. At this new venue too, we ran into capacity limitations and registration for the retreat had to be closed as early as February. For those who attended, however, Penzion Rokytenka offered a pleasant setting and a beautiful environment not only within the property grounds but also in the surrounding area. At this point, we are deciding whether to return here next year or take advantage of another option with a higher capacity. And how did we spend our week in Rokytnice? The contribution from Radim, who participated in the retreat for the first time, says it all. We thank him for his lines below and look forward to further gatherings together. On behalf of the organisers, Michal Skořepa.

Parking Card as Motorway Vignette Only Until the End of 2020

Currently, we use the parking card also as a motorway vignette. It can be used in any vehicle, but only in the presence of the card holder. From 2021, paper motorway vignettes will no longer be used, and an electronic motorway toll payment system will be introduced instead. This means that every car will be in the system's records, and those vehicles that are exempt from motorway tolls will be identifiable by the system, so there will be no penalties.

Women and bleeding disorders

Women bleed too, and not just during menstruation. For women with a bleeding disorder, menstruation can turn into a nightmare, with heavy bleeding lasting more than seven days. And since their mothers, grandmothers, and sisters may have similar problems, they consider it "normal". Menstruation lasting longer than 7 days, or requiring sanitary products to be changed every two hours, may be a symptom of a bleeding disorder. In such a case, the woman should be examined at one of the haemophilia treatment centres. The historically first meeting of women with blood clotting disorders in Europe took place in recent days in Frankfurt am Main. The conference was organised by the European Haemophilia Consortium (EHC), and the Czech Hemophilia Society was represented by our long-standing active member Tereza Říhová.

Once Up, Once Down (Below)

On the last Saturday of April, it was time to descend into the depths of the Anselm mine at Landek Park in Ostrava-Petřkovice. Landek is a hill in Ostrava, and not just any hill. It is a world-renowned locality in terms of geology, archaeology, history, natural science, and mining. From early morning it was clear that something was being prepared in the local compressor hall. From almost every corner of the country, participants dressed in red gradually began to arrive to share a day full of discovery and fun. All of this in connection with World Haemophilia Day, which we commemorate every year on 17 April. The majority were naturally local members of the Czech Hemophilia Society and Hemojunior — those from Ostrava, including the physician and nurse from the Ostrava haemophilia centre.

Cooling Gels for Haemophilia Patients

Medi-Globe s.r.o., a company that manufactures products for minimally invasive methods in the core areas of urology and gastroenterology, donated 400 cooling gel packs to the Czech Hemophilia Society. These can help not only with bleeding into joints and muscles, but also with pain relief and subsequent recovery. The gift was received from the hands of the company's managing director Thomas Garbe by CSH Chairman Martin Bohun, together with long-standing Society member Vladimir Mik, who played a major role in securing this donation.