Reine Hodroj – Learning to Live with Behcet’s Disease

Living with a chronic illness is an unimaginable challenge, and Behcet’s Disease has been my constant companion in this journey. This rare autoimmune condition, characterized by recurrent oral and genital ulcers, skin lesions, and systemic inflammation, has disrupted my life in many ways. However, my story took a positive turn when I found support through Cassie + Friends.

My journey with Behcet’s Disease was fraught with physical and emotional turmoil. The initial diagnosis left me in a state of confusion and fear. I was constantly battling a barrage of painful symptoms that ranged from mouth ulcers and skin lesions to debilitating joint pain and vision problems. The unpredictability of the disease added an extra layer of stress, making it difficult to plan my life or enjoy even the simplest of pleasures. I tried a seven different treatments in my quest to find relief from Behcet’s Disease. Each medication came with its own set of side effects, from nausea and fatigue to digestive issues and headaches. It was a never-ending cycle of hope and disappointment as I eagerly anticipated improvement, only to be met with another round of side effects. This rollercoaster of trial and error was physically exhausting, but it took a toll on my mental well-being as well.

The mental impact of Behcet’s Disease cannot be overstated. The constant pain and uncertainty cast a shadow over my life, leading to periods of anxiety and depression. I often felt isolated and overwhelmed, struggling to explain my condition to those around me who couldn’t comprehend the daily battles I faced.

That’s when I came across Cassie + Friends. While my condition isn’t juvenile arthritis, Cassie + Friends extends its support to all pediatric rheumatic diseases, including Behcet’s Disease. The warmth and inclusivity I found within the organization was a breath of fresh air.

Cassie+Friends offers a network of resources, including educational materials, support groups, and events where people with childhood rheumatic diseases can connect and share their experiences. These connections have been a lifeline for me, providing a safe space to discuss the challenges of living with Behcet’s Disease and to seek advice on managing symptoms and maintaining a positive outlook. Moreover, the organization’s advocacy work has been instrumental in raising awareness about Behcet’s Disease. Through their efforts, they have helped educate the public and healthcare professionals about this rare condition, reducing the stigma and misunderstanding that often surrounds it.