Stéphane visits patients hospitalized in the neurosurgery department headed by Professor Johan Pallud, as part of a partnership signed between GHU PARIS and AMAVEA in 2022.

He presents his background and his commitment:

Who am I?

My name is Stéphane, I am 36 years old and I support public employers in defining and developing their disability strategy so that they can, in turn, best support their employees with disabilities in compensating for their situation with specific adjustments (e.g., human, technical, logistical and administrative).

• My health history and that of my loved ones:

I was born with a rare genetic disease which allowed me to experience the hospital world from a very young age.

I had surgery for two brain growths in 1994 and 2010.

The first procedure left me paralyzed on my entire right side of my body, and the second procedure left me epileptic and requiring treatment.

For the past few years, I have partially recovered from my motor disability, and I am gradually recovering from my epilepsy thanks to my third brain operation scheduled for September 2024.

Almost 15 years later, another intervention was necessary because it was impossible for me to live without epileptic seizures on a daily basis (on average 2 to 4 seizures per month) despite a very heavy drug treatment that kept increasing year after year.

Today, I can live without epileptic seizures because the third intervention in 2024 was a resounding success, and I am delighted because I can share my long and painful experience with other people who have lived "the same journey" in life.

During my many hospital stays, I wished I had had visits from volunteers or people who could be there to listen to me, support me, and show me that these difficult times were only temporary and that things would get better with time. Above all, I wanted someone from outside the hospital to speak with my loved ones and share their experience so they could ask all their questions and feel reassured. Because it was my loved ones who were in much greater need than I was during each of my hospital stays.

• My experience as a peer supporter:

I shared my experience with other members of my immediate family who had lived through a similar life journey many years later. I realized the impact that experiential knowledge could have on others experiencing similar situations. That's why I wanted to extend this sharing to people outside my immediate circle.

For the past few months, I have been supporting my peers at Sainte-Anne University Hospital as a volunteer peer supporter. Having not had the opportunity to have a peer supporter to assist me and my loved ones, I am trying to provide what I lacked in my own time.