PSYCHO-SOCIAL EFFECTS OF HAVING A DISEASE LIKE PYRUVATE KINASE - PowerPoint PPT Presentation

PSYCHO-SOCIAL EFFECTS OF HAVING A DISEASE LIKE PYRUVATE KINASE DEFICIENCY A PATIENT PERSPECTIVE 6 th EUROPEAN SYMPOSIUM ON RARE ANAEMIAS 1 st Dutch-Belgian meeting for patients and health professionals 21 st - 22 nd November 2015 Amsterdam - The Netherlands

Disclosures Company name Research Employee Consultant Stockholder Speakers bureau Advisory board Other support Patiënt 6 th European Symposium on Rare Anaemias - 1 st Dutch-Belgian meeting for patients and health professionals

This talk is applicable for: Definite Probable Thalassemia’s x Sickle cell disease x Membrane disorders x (e.g. sferocytosis) Enzym defects (e.g. PKD, G6PD) x PNH x Other forms of hemolytic disease x 6 th European Symposium on Rare Anaemias - 1 st Dutch-Belgian meeting for patients and health professionals

MAAIKE EIJGENRAAM 6 th European Symposium on Rare Anaemias - 1 st Dutch-Belgian meeting for patients and health professionals

6 th European Symposium on Rare Anaemias - 1 st Dutch-Belgian meeting for patients and health professionals

SOME OF THE FIRST PKD PATIENTS 6 th European Symposium on Rare Anaemias - 1 st Dutch-Belgian meeting for patients and health professionals

Mijn Gezin My family 6 th European Symposium on Rare Anaemias - 1 st Dutch-Belgian meeting for patients and health professionals

Minnie’s eerste dagen Minnie’s first days of life 6 th European Symposium on Rare Anaemias - 1 st Dutch-Belgian meeting for patients and health professionals

Minnie 6 th European Symposium on Rare Anaemias - 1 st Dutch-Belgian meeting for patients and health professionals

Minnie 6 th European Symposium on Rare Anaemias - 1 st Dutch-Belgian meeting for patients and health professionals

SOME OF THE NEW GENERATION 6 th European Symposium on Rare Anaemias - 1 st Dutch-Belgian meeting for patients and health professionals

“ My son is such a brave happy baby, but please share about how frightening PKD is for the parents.” 6 th European Symposium on Rare Anaemias - 1 st Dutch-Belgian meeting for patients and health professionals

Uitdaging voor een kind Challenges for a child • Ziekenhuis • Hospital visits • Controle verlies • Losing Control • Identiteit • Identity • Pesten • Being Bullied • Geel zien • Seeing Yellow 6 th European Symposium on Rare Anaemias - 1 st Dutch-Belgian meeting for patients and health professionals

“I was on a bus when the conductor told me I was yellow , as if I didn’t know . I told him why I was yellow and that it was okay because I was having treatment. He didn’t believe me and threatened to stop the bus and get help. While everyone listened and stared , I persuaded him not to do that. Eventually we moved on .” 6 th European Symposium on Rare Anaemias - 1 st Dutch-Belgian meeting for patients and health professionals

Uitdagingen van (jong) Challenges of (young) Volwassenen Addults Kennis van ziekte Knowledge of the • • disease Opleiding • Education • Vinden van de juiste baan • Finding the right job • Het vinden van een • partner Social life • Sociaal leven • Starting a family • Het starten van een gezin • Deterioration of health • Achteruit gang van • gezondheid 6 th European Symposium on Rare Anaemias - 1 st Dutch-Belgian meeting for patients and health professionals

Gespecialiseerde : Specialised: Psychologigische hulpverlening Psychological help Fysiotherapeuten Physical therapy Zwangerschapsbegeleiding pregnancy counseling Gespecialiseerde centra Expertise centre Multi disciplinaire overleg Multidisciplinairy consultations 6 th European Symposium on Rare Anaemias - 1 st Dutch-Belgian meeting for patients and health professionals

Behandel de Mens, Niet alleen de ziekte Treat the Person, not only the disease 6 th European Symposium on Rare Anaemias - 1 st Dutch-Belgian meeting for patients and health professionals

6 th European Symposium on Rare Anaemias - 1 st Dutch-Belgian meeting for patients and health professionals

A special thanks to all the people that helped me with this talk by sending photo’s , quotes and stories ! www.pyruvatekinasedeficiency.com Facebook groep; People with Pyruvate Kinase Deficiency (https://www.facebook.com/groups/50217858779/ ) https://twitter.com/PyruvateKinaseD 6 th European Symposium on Rare Anaemias - 1 st Dutch-Belgian meeting for patients and health professionals