Head of the platelet/leukocyte serology laboratory, Sanquin Diagnostics, Amsterdam.
Involved in the ITP Patient Association since its foundation, initially as a board member and then as a member of the medical advisory board.
During my period as a member of the board, I was often able to provide explanations and offer advice about ITP in my capacity as a physician and employee of Sanquin. It was therefore a logical step for me to join the medical advisory board after retiring as a board member. This enables me to continue to contribute to and remain involved with the association.
Internist-Hematologist, UMCG Groningen
Working at the Haga Hospital and now at the Academic Medical Center Groningen (UMCG) I strive to devote more attention to a whole range of issues faced by the ITP patient! While important, it is not only about the plate count; it is also essential to look at the ITP patient’s quality of life. At the Haga Hospital, a special ITP outpatient clinic has been set up, in which an ITP nurse plays an important role. A web-based decision aid at this special outpatient clinic enables the patient (together with the doctor) to make a better choice of treatment. In the future, patient-reported treatment outcomes (the Patient Reported Outcome Measure, or PROM) should be used to better estimate the value of a particular treatment.
Noteworthy, the Haga Hospital is still the only hospital in the Netherlands where a spleen scan is performed to better estimate the chance of a successful spleen removal. The Haga Hospital was recently listed in the STZ top care register for this line of ITP care.
It goes without saying that it is my intention to set up this ITP care in the UMCG as well. I will also delve more deeply into the scientific research in the field of ITP at the UMCG.
Internist-Hematologist UMC/Van Creveldkliniek in Utrecht
ITP is a complex disease. Each patient is different when it comes to making the right choice for the best treatment. I think it is important to determine the best and most suitable course of treatment together with the patient. But it's not just about platelet count, there's so much more. Fatigue, anxiety, pregnancy, operations… each patient is different. This is what makes ITP special. As a member of the medical advisory board, I try to put ITP in a different light, to gain recognition for the impact of the disease, but also to find the best therapy.
Paediatrician - hematologist, UMC Utrecht
I see children with ITP whose experience varies from spontaneous recovery within three months to having the condition for years. The impact of ITP on these children and their parents is great, but fortunately with the right guidance they can lead as normal a life as possible. Children are treated on the basis of the tendency to bleed. Medication usually results in a temporary rise in platelets.
You can put any questions to me through the association.
Jaap Jan Zwaginga:
Hematologist, LUMC Leiden
As a member of the advisory board I try to act as a bridge between the practitioners and patients. I try to pass on new developments and listen to patients' stories.
Questions can be put to me through the association. When it comes to our knowledge of ITP, there is always scope for improvement and impressive developments are taking place in the field of chronic ITP. My aim is to help improve ITP treatment.
Internist-hematologist Erasmus MC Rotterdam
ITP is more than just a reduced platelet count. It is a complex disease, the course of which often varies per patient. Quality of life also plays an important role. At Erasmus MC we treat new ITP patients and patients with chronic ITP. I aim to improve the treatment of ITP through active participation in national and international studies. As a member of the Medical Advisory Council, I strive to put ITP on the map. Questions can be put to me through the association.
Paediatric hematologist Erasmus MC Rotterdam
In the Erasmus MC, Sophia Children's Hospital in Rotterdam I see children with a disease in the blood, including patients with ITP. ITP is a relatively rare disease in childhood and fortunately often goes away on its own - or with medication taken for a short period. However, in about 20% of the children, the complaints persist for more than one year, or can be so serious that longer treatment or more medicines are required. It is precisely this group of children who come to the Sophia Children's Hospital. In addition to patients with ITP, I also see children with a congenital deficiency of platelets. This is a completely different cause of low platelet count and is even rarer. This can resemble an ITP. For example, we occasionally catch an 'ITP' that is not an ITP, so that different treatment advice can be given such as a platelet transfusion. And this brings me to another area of my profession. I also work one day a week for Sanquin, the Dutch blood bank, where I think about improving blood transfusions in children and making them safer. Having such puzzles to solve while working with children makes for a very nice job!