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PARENTS AND CAREGIVERS
Self-care for caregivers
Steffen Hartwig is a 32-year-old haemophilia B patient from Germany, with an inhibitor in the childhood (1999-2010). After six years (2006), the inhibitor comes back. He got an threatended compartment syndrom in an muscle bleeding in the left lower leg with three times hematoma clearing.
The high titre, or high responding, inhibitor continues until March 2010 with an inpatient stay for the administration of rituximaband subsequqnt ITI.
He work for an IT-Service-Provider and is a board member of the German Haemophilia Society.
Mirko Jokic is actively involved in the Serbian Haemophilia Society (SHS), especially in the field of inhibitors. He initiated the establishment of the Inhibitor Group within the SHS, which deals with inhibitor-related topics and events. He is the coordinator of this group and works closely with other parts of the SHS. In addition, he is responsible for the online activities of the SHS, promotion and raising awareness on haemophilia through the social networks. Mirko himself is a PWI.
Miguel Crato has had severe haemophilia A with inhibitors since his youth. Currently, he is the President of the Portuguese Haemophilia Society and recently became a member of the EHC Steering Committee. According to Miguel, the European Inhibitor Network (EIN) is a very important step taken by the EHC in order to achieve a better way of communicating with people with inhibitors (PWI) and to evaluate their real needs and those of their families/caregivers. The online platform, as a part of the EIN, will provide good examples and useful tools to NMOs to create better level of integration for PWI within it.
Carl Fredrik Gustavsson
Hannele Kareranta is a 66-year-old eye doctor from Finland, who was diagnosed with von Willebrand Disease when she was six years old. She developed an inhibitor when she was 17 years old. Thanks to advanced treatment possibilities, she has done well and given birth to two healthy children, despite her diagnosis of von Willebrand Type III. She has been on the board of the Finnish Haemophilia Society and now is bringing her personal and organisational experiences to the IWG.
Jim O’Leary is a 61-year-old haemophilia A patient from Ireland with a high titre, or high responding, inhibitor, which he developed at age 14 in 1970, just a few months after having his first cryoprecipitate treatment. Now retired after having worked for 20 years in the UK as a European financial controller, followed by a more sedentary job due to his reduced mobility, he is a board member of the Irish Haemophilia Society. He has been married to his wife Monica since 1983 and together, they have two sons and three grandchildren.
Teresa Pereira comes from Portugal. She is a mother of two little boys, both with severe haemophilia A and inhibitors. They live near Lisbon. The haemophilia diagnosis was a surprise to Teresa’s family. Although it was later found that she was a carrier, until the first severe bleeding of her oldest son was reported, she never suspected she had a bleeding disorder herself. Teresa and her family are active members of the Portuguese Haemophilia Association. Teresa is also a member of the Portuguese Inhibitor Working Group, which organises meetings for this specific group in the haemophilia community.
Christina Burgess was formerly the Head of Services at the UK Haemophilia Society. She applied to be a member of the EHC IWG because her professional role already involved supporting people with inhibitors of all ages – children, teenagers and adults. Through her work she has gained a deep understanding of the issues a person with an inhibitor faces. Christina says that having an inhibitor is the last hurdle when it comes to care and the lives of people with inhibitors are often a roller coaster of uncertainty. Having originally trained as a counselor, Christina is currently setting up a counselling consultancy in the UK that will provide support specifically for people affected by bleeding disorders.