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

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Oct 16, 2022 288 likes •493 views

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

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6th EUROPEAN SYMPOSIUM ON RARE ANAEMIAS 1st Dutch-Belgian meeting for patients and health professionals

21st - 22nd November 2015 Amsterdam - The Netherlands

PSYCHO-SOCIAL EFFECTS OF HAVING A DISEASE LIKE PYRUVATE KINASE DEFICIENCY

A PATIENT PERSPECTIVE

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

Disclosures

Company name Research support Employee Consultant Stockholder Speakers bureau Advisory board Other

Patiënt

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

This talk is applicable for: Definite Probable Thalassemia’s x Sickle cell disease x Membrane disorders (e.g. sferocytosis) x Enzym defects (e.g. PKD, G6PD) x PNH x Other forms of hemolytic disease x

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

MAAIKE EIJGENRAAM

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

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

SOME OF THE FIRST PKD PATIENTS

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

Mijn Gezin My family

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

Minnie’s eerste dagen Minnie’s first days of life

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

Minnie

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

Minnie

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

SOME OF THE NEW GENERATION

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6th European Symposium on Rare Anaemias - 1st 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.”

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

Ziekenhuis
Controle verlies
Identiteit
Pesten
Geel zien
Hospital visits
Losing Control
Identity
Being Bullied
Seeing Yellow

Uitdaging voor een kind Challenges for a child

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6th European Symposium on Rare Anaemias - 1st 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.”

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

Uitdagingen van (jong) Volwassenen

Kennis van ziekte
Opleiding
Vinden van de juiste baan
Het vinden van een

partner

Sociaal leven
Het starten van een gezin
Achteruit gang van

gezondheid Challenges of (young) Addults

Knowledge of the

disease

Education
Finding the right job
Social life
Starting a family
Deterioration of health

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6th European Symposium on Rare Anaemias - 1st 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

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

Behandel de Mens, Niet alleen de ziekte Treat the Person, not only the disease

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

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

www.pyruvatekinasedeficiency.com Facebook groep; People with Pyruvate Kinase Deficiency (https://www.facebook.com/groups/50217858779/ ) https://twitter.com/PyruvateKinaseD A special thanks to all the people that helped me with this talk by sending photo’s , quotes and stories !