What was the beginning of the transition from being a patient to becoming a patient representative?
To answer this question, let’s take one step at a time.
The patient
I will try to keep it short and simple. This is my CV. It includes major life events related to my health. Or maybe, to put it in a better way, it includes events related to my medical condition.
- 1979-1985 Epilepsy (wrong diagnosis)
- 1985 Diagnosis Mesangiocappillare glomerulonephritis type I
- 1989-1991 Pediatric dialysis
“The waiting list is long; I was lucky and received a donor kidney after only 14 months of dialysis.”
- 1991 Kidney transplant postmortal
- 2003 Kidney transplant living donor
- The medication used in 2006 and 2016, respectively, caused major side effects like depression and avascular necrosis.
The patient is more than her illness
Fortunately, life is more than just being a patient. Thanks to a donor kidney at age 12, my health is well enough to live life to the fullest. I am more than just a patient!
- 1998 MDGO Nursing training
- 2001 HAN Social Work
- 2010 Radboud University Psychology of Culture and Religion.
- 2020 EUPATI NL
Currently working at the Netherlands Patients Federation
I didn’t quite reach the finish line for a higher education title. I came incredibly close. That in itself is something to be proud of. Life had other plans, and my journey took a meaningful turn. The patient path I’ve walked since has been one of growth, resilience, and deeper understanding. Every step has shaped me in ways no diploma ever could.
An active role as a patient
So let’s be honest, life is not always easy. I am thankful for the gift of life. I received a donor kidney at a young age. This new beginning was only a starting point.
Not all my fellow patients from the children’s department of the hospital were lucky. Some of them waited while on dialysis for years, and for some, it came too late.
The waiting lists for organ donation via Eurotransplant are long. My first step as an active patient was to fight organ shortage! I handed out leaflets with information about donor registration on a member’s day of the Dutch broadcasting company BNN. The goal was to make people aware they can make a choice and register their choice.
“Don’t take your organs to heaven.
Heaven knows we need them here.”
Kidney Patient Activist
In action for more registrations in the organ donation system (2001)
The second step was to volunteer at the Dutch Kidney Association. There is a lot you can do to help other patients. I choose to take effort in advocating for children and young adult kidney patients.
A patient representative
Over time I took interest in all different aspects of medication. As a receiver of a donor kidney, you must take a daily amount of prescribed medication to live. But over the years side effects became more and more of a challenge. And it comes with a question mark; sometimes people deal with major side effects. Side effects can be worse than the disease itself. And even less severe side effects can still be a burden in everyday life. So what can we as patients do about it?
I signed up for the Eupati study to learn more about medication innovation and development. To represent the patient’s perspective and make the patient’s voice heard in the process of Research & Drug (R&D) Development.
In 2020, I graduated as an Eupati Fellow from the Dutch program. This program focuses on the laws and healthcare in the Netherlands. For more information, visit the Eupati NL website: Eupati Nederland study.
Do you think we, as patients, can make a difference? Well, we can try!
Op weg naar medicatie zonder bijwerkingen met EUPATI Nederland
