Patient Stories

Sait Mentesbirlik

Sait, GBS Patient

In April 2013, my life took an unexpected turn when I was struck by a rare disorder known as Guillain-Barre Syndrome (GBS). Until then, I had never heard of this condition, nor did I anticipate the profound impact it would have on every aspect of my existence. It all began with difficulties swallowing in the morning and a gradual loss of movement in my hands, signalling the onset of GBS—a mysterious adversary that was about to challenge me in ways I never imagined.

The initial onset of GBS is often a bewildering experience, characterized by a sense of confusion, intense pain, and overwhelming fear. Everyone’s journey with GBS is unique; some may recover swiftly, while others face a longer and more arduous road to recovery. In my case, the battle against GBS led me through a harrowing hospitalization process that tested my strength and resilience to the core.

For nearly a year, I found myself confined to the sterile confines of the intensive care unit, reliant on a mechanical ventilator to sustain my faltering breath. The toll of the illness was evident in the severe damage inflicted upon my hands, the persistent struggle to draw a full breath, and the daunting task of reclaiming mobility after even the simplest of movements. Yet, amid the relentless onslaught of physical and emotional challenges, my spirit remained unbroken, fuelled by an unwavering determination to persevere.

Throughout my hospitalization, the quest for information and guidance became a lifeline in the turbulent sea of uncertainty. Yet, the search for individuals who could offer firsthand insight into navigating the complexities of GBS proved to be a daunting task. It was in this moment of despair that I resolved to transform my adversity into an opportunity for good—to extend a helping hand to others grappling with the same plight.

Upon my discharge from the hospital, my body remained imprisoned by the shackles of paralysis, rendering me bedridden and utterly dependent on the assistance of others. It was during this period of profound vulnerability that a beacon of hope emerged in the form of the GBS-CIDP International Foundation. In 2015, while scouring the depths of the internet for solace, I stumbled upon this invaluable resource—a sanctuary of knowledge and support that would forever alter the trajectory of my journey with GBS.

Under the unwavering guidance of mentors like Patrizia and Kath, I embarked on a mission to harness the power of community and solidarity in the fight against GBS. Armed with newfound purpose and fuelled by the boundless generosity of spirit exhibited by fellow warriors, I spearheaded the establishment of a GBS support network across Turkey—an initiative that has since blossomed into a lifeline for over 500 patients, their loved ones, and caregivers.

As an international volunteer for the GBS-CIDP Foundation since 2015, I have witnessed firsthand the transformative impact of collective action in the pursuit of a common goal. Together, we stand as guardians of hope, united in our resolve to confront GBS head-on and advocate tirelessly for those whose voices have been silenced by this relentless adversary.

While GBS may have left its mark on my body, it has failed to extinguish the flame of resilience burning within my soul. As I look towards the future, my dreams are filled with aspirations of expanding our advocacy efforts and establishing a Turkish branch of our foundation—a testament to the indomitable spirit of solidarity that binds us together.

In the embrace of the GBS-CIDP Foundation, I have found purpose, community, and unwavering support. Together, we shall continue to defy the odds, overcome adversity, and chart a course towards a brighter tomorrow filled with love, compassion, and boundless possibilities.