Episode Details

👉 Read the full blog article here: https://ms-perspektive.com/131-joke-soetart

In this inspiring interview, Belgian midwife and patient expert Joke Soetaert shares how her 2019 MS diagnosis became a catalyst for growth, advocacy, and community. She talks about mindset, research participation, empowering young people with MS, and why patient voices belong at every table.

• Joke's MS diagnosis in 2019 and first symptoms

• Mindset, lifestyle and work changes

• Participation in more than 10 MS studies

• Why patient voices matter in research and care

• Empowering youth with MS at MS-Liga Vlaanderen

• Insights from ECTRIMS & EMSP conferences

• Prevention, comorbidities, and resilience

• Hopes for precision medicine and the future

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1. Personal Journey & MS Diagnosis Can you introduce yourself and tell us a bit about your work as a midwife? Joke: I'm really grateful that you thought of me, and I'm so happy to be part of this podcast. So hello, my name is Joke Soetaert and I am 33 years old. I live in Belgium and I work as a midwife. Most of the time I take care of premature and sick babies, but I also work on the maternity ward with mothers who have just given birth and their newborns, pregnant women and women recovering from gynecological surgery.

How did you experience the moment of your MS diagnosis in 2019, both personally and professionally?

Joke: Well, it actually started about nine months earlier. In the summer of 2018, I was about to change jobs. I was working in a large hospital in the surgical theatre, and after five years I was finally going to follow my dream of working as a midwife. Just before that change, I had an episode of optic neuritis. The neurologist told me that I had a higher risk of developing MS and suggested regular follow-up at neurology. So nine months later, I was settling into my new job. I had just finished four very busy night shifts. After the last one, I felt a slight numbness in my fingertips. The neurologist had told me that almost any symptom could be linked to MS, so of course it crossed my mind. But I didn't really believed it, I was still in denial. The next morning, I woke up with the same feeling in the fingers of my other hand. That could no longer be a coincidence. I contacted my neurologist, and very quickly I was admitted, so both MRIs, brain and spinal cord were planned, along with other tests. On Monday I was admitted, and the first MRI was of my spinal cord. It already showed a fairly large white matter lesion. Because of that, I received the diagnosis of MS the same afternoon. It felt like the ground disappeared beneath my feet … People often say that after receiving a serious diagnosis, you only remember a small part of what the doctor tells you. I can definitely confirm that.

The next day, the brain MRI turned out to be completely normal, I had no lesions. I also began another round of corticosteroids, three infusions. I was allowed to go home during the day because in my hospital the infusions are given at night. So two days after my diagnosis, I was with my boyfriend. We were in a relationship of about one and a half year. He suddenly told me that he couldn't handle it anymore. He said he was afraid of the future, especially of the idea that I might end up in a wheelchair. I