Management Board

Ineke Steetskamp

About ten years ago, when I was 53, I was diagnosed with ITP. My GP initially did not take my bruises very seriously. It was only after I returned from a holiday, covered in bruises, that the diagnosis was made. I had left for that holiday with a nagging feeling that perhaps it was not a good idea to go. After several courses of prednisone, my doctor suggested the possibility of having my spleen removed, but that did not feel right to me.

I had joined the ITP Patients’ Association immediately after my diagnosis. Thanks to the association, I learned about a liver-spleen scan, which showed that most of my platelet destruction was taking place in the liver rather than the spleen. This meant that having my spleen removed was no longer an option. In the end, combination therapy worked for me: a TPO receptor agonist together with a dose of prednisone.

My illness and the search for suitable treatments have had a significant impact on my life, both personally and professionally. For me, one of the most challenging aspects of ITP is finding the right balance, not just when it comes to medication. I used to be a very active person, enjoying all kinds of sports, cycling, gardening and hiking in the mountains, while also holding a demanding job. Accepting that I can no longer do everything at the same level as before has been a difficult process. I have since exchanged my position as Head of Finance for a more general finance role, working fewer days a week.

The Patients’ Association was a great source of support while I was searching for treatments and learning to cope with my illness. Becoming involved as a board member therefore felt like a natural next step. I find it rewarding to work with like-minded people to raise awareness of ITP. People who have just been diagnosed, in particular, need information and guidance.

As Co-Chair, I believe it is important to help share knowledge about ITP, including knowledge and developments from other countries. Ensuring the continuity of the association is another key priority. I am committed to working towards these goals together with the other board members and all the volunteers who contribute to our association.

Mieke Budel - Mobach

Co-chair

My name is Mieke Budel. I am 64 years old and live in Soest, the Netherlands. I have been married to Leomarijn for 37 years. We have three adult children and two grandchildren. I took early retirement on 1 January 2026. I worked as a nurse at the Groene Hart Hospital in Gouda, in the Sleep Care Clinic. I still work occasionally when needed, on a zero-hours contract.

I was diagnosed with ITP in 2008. I was already somewhat familiar with the condition because my mother also had ITP. This is quite unusual, as most people with ITP do not know anyone else with ITP. It is certain that I do not have the hereditary form of thrombocytopenia; in 2005, my platelet count was still well within the normal range.

In 2008, I noticed that I had a lot of bruises without any obvious cause, so I decided to have a blood test. It turned out that I had ITP too. When my mother developed ITP in the early 1980s, very little was known about the condition. Treatment consisted of prednisone, followed by surgical removal of the spleen. There were no other options. Fortunately, things are very different today.

Shortly after my diagnosis, I took prednisone for several months, but unfortunately, it did not have the desired effect. After gradually reducing and stopping the medication, I was able to go several years without treatment, despite consistently low but stable platelet counts. Unfortunately, this does not mean that I was free from ITP-related symptoms during those years. Fatigue and brainfog, for example, led me to reduce my working hours.
In 2014, I developed joint problems and my platelet count dropped further. I then started treatment with a TPO receptor agonist, which I took at a low dose for almost nine years. About three years ago, I wanted to find out whether I could manage without medication, as my platelet counts were looking so good. Although they have dropped again, I am still managing without treatment!

I joined the Patients’ Association immediately after my diagnosis and started attending its patient meetings. I have been a member of the association’s board since 2018 and have served as Co-Chair since 2020.
I believe it is important to provide information about ITP to everyone affected by the condition, whether they are patients, family members or healthcare professionals. I have seen how much people appreciate the information our association provides, just as I did myself, especially in the early days after my diagnosis. I am very happy to contribute to this work. That is why I believe it is important to attend national and international conferences and symposia, so that I can keep up to date with the latest developments and share this knowledge with people with ITP, both members and non-members of our association.

Petra van Middelkoop

Secretary

My name is Petra van Middelkoop, I am 55 years old, happily married to Martin, and together we have four children and two Labradoodles. We have lived in Zwijndrecht for many years, where I also grew up.

Now that our children have all left home, I have more time to dedicate myself to the ITP Patients’ Association and make a meaningful contribution to its work.

After our fourth child was born, I decided not to return to paid employment. Our children preferred having me at home rather than being looked after by someone else. As they grew older, I became the secretary of our church 20 years ago, a role I still enjoy very much.

I was diagnosed with ITP in 1975. At first, the doctors did not know what was wrong, but eventually they identified it as Werlhof’s disease, as ITP was known at the time. A course of prednisone brought my platelet count under control, keeping it between 100 and 150. During my childhood, I had two further relapses, both of which were treated with prednisone. After a long, stable period of around 30 years, during which my platelet count remained between 100 and 150, ITP returned in 2018. My platelet count had dropped to just 4. After an intensive course of prednisone, my counts stabilised again and have remained stable ever since. I am no longer under regular medical supervision. I joined the ITP Patients’ Association in 2018 and have found it a great source of support. Last year, I joined the board because I wanted to give something back and help make a difference for other people living with ITP.

Marjan Pronk - Ligthart

Treasurer

I would like to introduce myself. My name is Marjan Pronk-Ligthart, and I have been married to Derk Jan for over 40 years. I am the mother of three wonderful adult children, all of whom have their own homes, mother-in-law to two, and a proud grandmother of three young grandchildren, including twins. I love spending time outdoors with our dachshund, Noor, especially enjoying a refreshing walk along the beach when the weather is nice and cool. When I have a free evening, I enjoy working on a quilt. Sitting comfortably on the sofa and creating beautiful things from pieces of fabric is very relaxing for me.

As Treasurer of the ITP Patients’ Association, I am responsible for the association’s finances, grant funding and related matters. I have always worked in the financial sector.

As a board member, I am keen to help raise awareness and promote greater understanding and acceptance of ITP, both in the Netherlands and internationally whenever possible. I also enjoy organising our national patient meetings, usually together with Mieke. In addition to my work for the association, I am a local councillor and Chair of the Audit Committee for the ChristenUnie in my municipality. These roles take up quite a lot of my time, but I find it very rewarding to contribute to the well-being of the people in our community and the surrounding villages.

Henk Timmer

General board member

My name is Henk Timmer, and I have been happily married to Ilse (Jaminagatoen) Abdoelkhan for 25 years. We are grateful to have five children, eleven grandchildren and two great-grandchildren. We have lived in Zoetermeer for the past 15 years, and since this year, one of our granddaughters, who is a student, has been living with us.

I grew up in the province of Brabant and lived in several different places during my career as a professional soldier. From 1985 to 1989, I also completed a degree in Mechanical Engineering at Delft University of Technology. After graduating, I moved from operational military roles to logistics staff positions within the Ministry of Defence. It was during that period that I discovered I had ITP, a condition I have now lived with for around 40 years. After retiring as an officer, I learned about the ITP Patients’ Association. I have come to know it as a welcoming and supportive community where many initiatives are developed to help and support people living with ITP.

Rob de Haan

General board member

My name is Rob de Haan, I am 50 years old and live with my family in Amersfoort. There are four of us at home: my wife, our two now-adult children and me. I currently work in IT, having spent more than 25 years as a professional soldier. My hobbies include sports, DIY projects and enjoying a good glass of beer.
In 2008, a low platelet count was discovered incidentally during a routine blood test. After ITP was definitively diagnosed, I joined the ITP Patients’ Association. Although I experience hardly any symptoms of ITP in my daily life, I am glad I became a member of this active association.

As a board member, I would like to contribute to representing and protecting the interests of our members. I hope we can continue to be an association where everyone feels welcome and at home.