IPOPI is launching today the first patient video testimonial in Dutch, done in collaboration with SAS, our National Member Organisation (NMO) in the Netherlands. Several patients, parents and physicians, collaborated with IPOPI, by sharing their experiences with diagnosis, treatment and quality of life. The first video features Mrs Elize de Reus and her son, a patient with a rare PID condition.
Elize de Reus and her husband Peter de Reus were very happy to finally have a name for their son’s condition. He has Chronische Mucocutaneous Candidiasis, a rare form of primary immunodeficiency (PID), and the diagnosis was done when he was nine years old.
Many patient and parents are faced with the uncertainty of not having a diagnosis or of not having a correct diagnosis. The diagnosis is a prognostic factor that allows the patient and family to better understand the condition, to know what to expect and what treatment to pursue.
More videos with patient testimonials in Dutch with soon be released. Young patients shared very positive details about becoming more independent, being able to travel to study and work abroad. Older patients’ experiences vary greatly especially as some saw their health heavily impacted by late diagnosis.
In 2014 IPOPI produced a first series of patient testimonials in English. The latest videos released by IPOPI are the outcomes of a Video Road Show project during which IPOPI visited six different countries to produce videos in six different languages, with subtitles in English, broadening the possibilities for raising awareness about PIDs, access to diagnosis and appropriate treatments, burden of treatment and quality of life aspects.
This project was supported by Shire. The rights and ownership of all films are owned by IPOPI and can be used by the participating NMOs for their national awareness raising purposes.
Stay tuned to IPOPITV and to our social media pages!