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Parenting a child with inhibitors
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PARENTS AND CAREGIVERS
PARENTS AND CAREGIVERS
Dr Maria Elisa Mancuso
Maria Elisa Mancuso (MD, PhD) is a senior consultant in Hematology with special interest in Haemostasis. She obtained a post-degree in Clinical and Experimental Hematology and a PhD in Clinical Methodology. She worked as a Clinical Assistant at the Angelo Bianchi Bonomi Hemophilia and Thrombosis Center in Milan (Italy) from 2008 to 2020. She is involved in clinical research and has published several original articles in peer-reviewed journals as Blood, Journal of Thrombosis and Haemostasis, Haematologica, Thrombosis and Haemostasis, British Journal of Haematology and Haemophilia. She is a member of several national and international scientific societies (AICE, SISET, ISTH, WFH, ASH, EAHAD). She is Co-Chair of the Scientific and Standardization Subcommittee of ISTH (SSC-ISTH) on FVIII, FIX and rare bleeding disorders. She has been involved as co-investigator in several clinical trials, and she takes care of both children and adults with hemophilia with a specific scientific interest in inhibitors, chronic hepatitis C, optimization of prophylaxis and novel therapies.
Dr Alison Dougall
Alison Dougall is a clinical consultant in special care dentistry at the Dublin Dental University Hospital (DDUH). She is also involved in the teaching and training of dentists at Dublin University Hospital at undergraduate, postgraduate and doctorate level. She is the chair of the Clinical Audit Committee. As part of her role at DDUH she provides consultant-led dental clinics within St Vincent’s University Hospital and St James’s Hospital in Dublin, Ireland.
In 2014, Dr Dougall was elected as a Chair of the Dental Committee of the World Federation of Hemophilia (WFH) and has been invited to be part of the working party advising on the European Principles of Care for people with haemophilia. Dr Dougall is the past president of the Irish Society of Disability and Oral Health and the Editor of the International Association for Disability and Oral Health. She is on the Academic Reference Panel for the Irish Department of Health advising on the new Oral Health Policy for Ireland. In 2017, Dr Dougall joined the Medical and Scientific Advisory Group (MASAG) of the European Haemophilia Consortium (EHC) as a specialist in dental and oral care for people with bleeding disorders.
Piet de Kleijn, PT
Piet de Kleijn is a Senior Physical Therapist at the Department of Rehabilitation, Physiotherapy Science and Sports at the Utrecht University Medical Center, The Netherlands. After qualifying as a physiotherapist from the Academy of Physical Therapy, Utrecht, in 1979, he trained as a manual therapist and post-academic training in basic science at the Dutch Institute of Allied Health Care (NPI). He has extensive international experience in presenting physiotherapy topics and running workshops at congresses and during several Twinnings of the World Federation of Hemophilia (WFH), and his center (Van Creveldkliniek) was awarded as the WFH ‘’Twinning of the year‘’, in 2012. He was initiator of the Global Physiotherapy Initiative, commonly known as the Train the trainer concept.
He was awarded the Vincenzo Pietrogrande Award on behalf of the Musculoskeletal Committee of the WFH, as well as the International Healthcare Volunteer Award of the WFH in Paris, France, in 2012. Recently, he was the first Chair of the European Association for Haemophilia and Allied Disorders (EAHAD) Physiotherapists Committee (2016-18), and will be a board member from 2018 till 2020. A pre congress multidisciplinary day is one of the achievements of this committee.
Dr Paul Giangrande
Paul Giangrande was the chair of the EHC Medical Advisory Group (MAG) between 2013 and 2018 and is still the chair or EHC Inhibitor Working Group.
In 2015, Prof Giangande retired from his position as consultant haematologist at Oxford University Hospitals NHS Trust (UK) where he was also the director of the Oxford Haemophilia Centre.
Prof Giangrande qualified in medicine from the University of Manchester (UK) in 1979, after previously obtaining a First Class Bachelor of Science (BSc) degree in pharmacology. After obtaining postgraduate qualifications in both adult and paediatric medicine, he trained in haematology in various major hospitals in London. He obtained a research doctorate in 1991 for his work at the Royal Free Hospital in London (UK) on immunological aspects of haemophilia treatment. He subsequently worked in Italy at the Milan Haemophilia Centre with Professor PM Mannucci between 1989 and 1990, before being appointed to his position in Oxford in 1991.
He served as elected WFH vice-president (medical) from 2000 to 2008 inclusive and has wide international experience in the field.
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.