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My Behçet's Journey: A Personal Odyssey through Uncertainty and Resilience



In 2016, my life took an unexpected turn when the silent arrival of painful mouth ulcers hinted at the beginning of a profound health challenge—Behçet's Disease. Initially dismissing these sores as minor inconveniences, I soon found myself entangled in a complex and often frustrating medical journey.

 

By 2017, the ulcers intensified, bringing with them an unwelcome chorus of fevers and night chills. Seeking solace and answers, I embarked on an odyssey through a myriad of specialists. Unfortunately, the road was fraught with dismissals and attributions; an Ear, Nose, and Throat doctor waved off my agony as stress-induced, casually linking my high blood pressure to my youthful age of 17.

 

The journey through gastroenterologists, diseases, and infections specialists resembled a disheartening labyrinth of confusion and despair. Months later, the elusive diagnosis materialized—Behçet's Disease. However, the comfort of a name for my ailment was fleeting, as the rheumatologist in Lebanon offered scant guidance, merely pointing out the unusual color of my ulcers and prescribing painkillers.

 

Undeterred, I sought the expertise of a renowned rheumatologist in Dubai. Conventional treatments like colchicine and amprilast proved futile, unraveling side effects that added to my suffering. Hope flickered back to life with the introduction of Humira injections, providing a brief respite from the relentless assault on my body.

 

Unexpectedly, the narrative took a cruel twist with the arrival of COVID-19. The progress I had fought tooth and nail for crumbled, and the ulcers, once mere whispers, transformed into a crescendo of agony. Mouth and genital ulcers, eye sores, and joint pain became the relentless storm I faced.

 

Amidst the tempest, I clung to hope, navigating through different treatments until Simponi emerged as a lifeline. While not a miraculous cure, Simponi brought a semblance of stability to my life, offering a fragile sanctuary in the tumultuous landscape of Behçet's.

 

In this ongoing journey, flare-ups are met with cortisone, and every day involves a delicate dance between self-care and the unpredictable nature of the disease. This narrative is not just about symptoms and treatments; it's a testament to resilience, an acknowledgment of an unwavering spirit that refuses to be extinguished by the shadows of an unpredictable ailment.

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