As part of the second NNHF project in Jordan a workshop took place on 15 January at the haemophilia education centre located at the Jordan University Hospital. Around 35 patients with their families were present.
Prof Awidi, the project leader and counsellor to most families, welcomed the participants showing his appreciation of their engagement and interest in learning more about haemophilia and allied bleeding disorders.
Dr Jehad Ajlouni, orthopaedic surgeon, talked about diverse subjects like what kind of shoes to wear, how children can safely play, the positive effects of sports like swimming and safe use of anti inflammatory products. He also explained the procedure of chemical synovectomy and when it is best indicated. There were several patients present that had already been treated by this procedure and gave their testimony. One of them was Laith Lahan, a 9 year old with severe haemophilia B. He is a very well spoken person and asked several interesting questions. He had the sinovectomy conducted on his knee and feels much better now. Rami Inadal, a 16 year old with severe haemophilia A, successfully had the procedure done on his elbow.
A father with his two sons that have severe haemophilia A spoke about their difficulties. As they are refugees from Gaza, they don’t have social security numbers or money to pay for procedures like this. Prof Awidi explained that in Jordan the United Nations is the only institution taking care of refugee families and he would contact them to ask about how they could help.
Dr Ahnad Handan, the hospital’s dentist, explained how inflammation starts and occurs in the gums and the consequences. He also made a detailed explanation of brushing techniques, use of analgesics, the importance of frequent check-ups especially between the ages of six and twelve and use of gels after dental surgery. Laith asked to speak to the audience about his positive experience using gels after dental extraction.
Mrs Sophia Al-Adwan gave a very informative explanation about von Willebrand disease. Some of the families affected spoke about the difficulty in being diagnosed before coming to the University Hospital.
A mother of a boy with moderate haemophilia A expressed her frustration after going to several different physicians in her region who could not explain the prolonged prothrombin time found on his exams. "Fortunately, I was referred to Prof Awidi who gave us the correct diagnosis". Now, she would like to help Prof Awidi to identify families with bleeding disorders.
Prof Awidi often organises gatherings like these. They are a great opportunity to share knowledge about bleeding disorders, for the patients to share their experiences and build a network.
