December 21, 2016
PID patient video testimonials in Portuguese now online!
IPOPI has launched today video patient testimonials of Portuguese patients, parents and physicians, done in close collaboration with APDIP. The first two videos feature Ricardo Pereira, APDIP’s president and X-Linked Agammaglobulinea patient and Dr Susana Lopes da Silva.
Ricardo shares his experience with diagnosis and highlights the health and social benefits of having an early diagnosis.
Dr Lopes da Silva explores what primary immunodeficiencies (PID) are and talks about how they are diagnosed, evolving from clinical presentations observed by the physicians closer to the patient (family doctor, paediatrician, etc.), to referral to a main hospital or reference centre and genetic diagnosis.
More videos with patient testimonials from Portuguese patients and their families will be released this month. These will include testimonies of patients who were diagnosed in adulthood and their experience with their diagnosis as well as a mother’s perspective after her child was diagnosed with a Severe Combined Immunodeficiency (SCID) and treated with a bone marrow transplant in Necker Hospital in France.
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 Baxalta/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!