Surviving hemophilia – An autobiography

In this contribution, medical historian and HHH member Annemarie de Knecht-van Eekelen puts the spotlight on the life story of Cees Smit, a first hand account of the experience of hemophilia and the historical development of its treatment over the last seventy years. This book, that was edited by Annemarie, was nominated for a Black Pearl Award by EURORDIS, the non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases in Europe and beyond

Annemarie de Knecht-van Eekelen

Medical history is more than the story of the achievements of the frontrunners of medical research and treatment. For the members of the History Health & Healing network this is stating the obvious, but it is a fact that historical accounts from within, from the patient, are still outnumbered by accounts from a professional perspective. Surviving hemophilia, a road trip through the world of healthcare is such an inside story. It is the autobiography of Cees Smit, who was born in 1951 with severe hemophilia A. At the time of his birth, his life expectancy was 25 years or less. He is still alive today, however, having devoted his life to the improvement of hemophilia care. This book tells his life story against the background of the worldwide developments in hemophilia treatment.

To give an example, in the 1970’s, so-called “Factor VIII products” made out of human blood plasma were introduced as treatment. They certainly changed the life of people with hemophilia, but in a disastrous way, as a decade later many of them got infected with HIV and hepatitis through these products. As a result, Cees lost many friends in the hemophilia community because of hemophilia, HIV and HCV.

In his book, Cees covers his work as a patient advocate and coordinator of the NVHP (Nederlandse Vereniging van Hemofilie-Patienten, Dutch Society of Hemophilia Patients). One of the major topics is the development of the blood plasma market, which he closely followed, both in the Netherlands and internationally. In the literature, the plasma donor is compared to an oil well, and the separation of blood into its components to the refining of crude oil. This image inspired Cees to creating a series of paintings of gas stations. Many are in the book, including one on the front cover.

Nominated for the EURORDIS Black Pearl Written Media Award

In 2021, Cees Smit’s autobiography was one of the four nominees for the Black Pearl Written Media Award, presented by EURORDIS, the non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases in Europe and beyond. Cooperation between patient organisations for rare diseases started in the Netherlands in 1979, when the VSOP (Vereniging Samenwerkende Ouder- en Patiëntenorganisaties betrokken bij erfelijkheidsvraagstukken, Association of Co-operating Parent and Patient Organisations) was founded. On the European level, the European Haemophilia Consortium was established in 1993, EURORDIS in 1997. This is recent history: many of the initial founders are still among us and it is an interesting area for research.

The Dutch edition of the book, entitled Overleven met hemofilie, will be presented on March 12 with a webinar about the dilemma’s regarding the safety, availability and accessability of medication for rare diseases. For more information and registration see the NVHP website.