Today I welcome Pieter van Galen as my interview guest and we are talking about living with MS in Belgium. Pieter is a patient advocate at the European Multiple Sclerosis Platform (EMSP) and has a long history with Multiple Sclerosis, as he had his first problems as a kid, when he was nine years old.
His positive attitude is wonderful and surely helps him to enjoy life in the best way day to day. So get inspired by Pieter and learn about MS care and the supporting system in Belgium.
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Table of Contents
Introduction Pieter van Galen
Pieter van Galen is a patient advocate who works at European Multiple Sclerosis Platform (EMSP). He is a trainer and consultant and lives with his wife and two daughters in Overijse, Belgium.
Personal Experiences and Coping Strategies
Can you briefly share your personal journey with MS and how it has impacted your life?
My MS journey started from 9 years old in 1985 when I had my first MS problem. It took many other MS attacks until I received my diagnoses at 31 years old in 2007.
In your experience, what are some of the most effective coping strategies or self-care practices for managing the daily challenges of living with MS?
I think a positive mindset is key. See what you can still do and all the things you wouldn’t do if you had MS. For me that means e.g. parking card, assistance at the airport, attend international congresses,…
How important is mental health and emotional well-being for individuals with MS, and what support is available in this regard?
Very important. I recommend psychiatrists and mind full ness training.
Treatment and Care in Belgium
What types of MS treatments, therapies, or interventions are more commonly recommended or accessible in Belgium?
All existing disease-modifying therapies (DMT’s) are available for patients, as well as physio therapy. You can get rehab in MS centers. And a very defined group of people can get aHSCT (autologous hematopoietic stem cell transplantation) paid by the health care system.
Are there any specific laws or regulations in Belgium that protect the rights and promote the well-being of individuals living with MS?
You don’t have to tell your employer that you have a disease. On the aspect of social security: a lot of medication is paid back. In more advanced stages, disability status and allowance from government is offered.
Can you share any recent advancements or developments in MS treatment, care, or support in Belgium that you find particularly promising?
Stem-cell treatment is part of the regular options, but just for a very specific group of people. More and more new medication is approved for SPMS. And there are nowadays different ways to administer – so that the patient can choose his/her own treatment and switch if needed/wanted.
Challenges and Support Systems in Belgium
Can you provide an overview of the healthcare system in Belgium and how it supports individuals living with MS?
Again from the social security point of view a lot of medication is paid back. In more advanced stages, disability status and allowance is provided from government.
Are there any specific resources or support networks available for MS patients in Belgium, such as patient associations or community organizations?
We have two patient associations in Belgium:
There are talk groups for people with multiple sclerosis (PwMS) and for family members and children as well as special offers for young people with MS.
What types of healthcare professionals are typically involved in the care and management of MS in Belgium, and what role do they play?
It starts from the general practitioners and goes on to physiotherapists, neurologists, MS-nurses and other specialists at MS centers.
Are there additional challenges to living with MS when you are over 60?
Aging comes with more disabilities.
Education, Awareness, and Advocacy
Are there any specific initiatives or programs in Belgium that focus on raising awareness about MS and educating the public about the condition?
The World MS-day is very popuar with special chocolate sales. The MS societies try to raise awareness with MS experts that can be asked to talk to students, pharma, government,…
How can individuals with MS in Belgium actively advocate for themselves and ensure they receive appropriate care, support, and accommodations?
I suggest to everybody to prepare your appointment with you care team well. Make lists with questions so you don’t forget anything. Join the MS society to get information.
What role do family members and caregivers play in supporting individuals with MS in Belgium, and what resources are available to support them?
They are very important and offers to them are mainly talk groups for partners and children offered by the MS societies.
What advice would you give to individuals with MS in Belgium who may be feeling overwhelmed or discouraged? How can they maintain a positive outlook?
Don’t spend too much time on social media. Join an MS society and read quality information on websites, talk to peers (buddy system).
Quickfire Q&A Session
Complete the sentence: "For me, multiple sclerosis is...."
A challenge.
Which website can you recommend for people living with MS in Belgium?
What development would you like to see in the field of multiple sclerosis in the next 5 years?
Myelin recreation and effective therapies to stop MS progression.
Farewell
Finally, what message of hope or encouragement would you like to share with individuals living with MS in Belgium?
Live day by day, and plan for the future (look at what you can still do and enjoy life).
How and where can interested people find you online?
Many thanks for Pieter for providing such a good overview on the health care system, treatment options and available supporting offers for people with MS in Belgium.
See you soon and try to make the best out of your life,
Nele
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