Participatory research – Living with an undiagnosed rare disease

18.10.2021 – In his autobiography «husten verboten» (coughing prohibited), Hansruedi Silberschmidt describes his life as a child and young adult with an undiagnosed disease and his path of suffering until he was finally diagnosed with primary ciliary dyskinesia (PCD) at the age of 39.

This book is an extraordinary testimony of a person with a rare disease who had a long and stony path towards a diagnosis. Only knowledge of the diagnosis enabled the author, late in life, to obtain specific therapies, to be recognised as a patient rather than a simulator, and to find support from other people living with the same problem. The author suffered from typical symptoms of PCD since birth, with a neonatal respiratory distress syndrome and chronic upper and lower respiratory symptoms throughout childhood, was seen by many specialists and spent months in rehabilitation clinics. The doctor who found the clue to the underlying disease was not a specialist but his family physician – the only one who listened carefully to the patient’s history. The book is also a story about the history of paediatric medicine in Switzerland and an enjoyable and exciting read. Despite all, the author remains positive and shows the reader – be it a person with a rare disease or a doctor - solutions and ways out of dead ends.

The author, Hansruedi Silberschmidt, is involved in participatory research on Primary Ciliary Dyskinesia at the ISPM Bern ( A detailed recension of the book by Claudia Kuehni is available in German on

The book is currently available in German but we seek for funding for an English edition.

You can buy it:

  • directly from the author Hansruedi Silberschmidt: by prepayment to TWINT (079 255 83 08, please add your name and address) - CHF 32.00 for the book incl. shipping, only within Switzerland
  • from the editor:
  • in regular bookstores: ISBN 978-3-907243-00-8 - Hansruedi Silberschmidt: husten verboten – Ein Leben mit einer seltenen Krankheit - Verlag elfundzehn, Zürich 2021.

At ISPM we continue to do research on the epidemiology of PCD under the leadership of Prof. Claudia Kuehni. Primary ciliary dyskinesia is a rare genetic disorder that causes defects in the action of motile cilia leading to chronic lower and upper respiratory tract infections, laterality defects, and male infertility.