Living with a genetic rare disease is an ongoing journey of challenges, resilience, and unexpected turns. My own experience with Fibrous Dysplasia McCune-Albright Syndrome (FD/MAS) has been proof to the unpredictability and complexity that come with such conditions. It’s a path marked by constant care, unexpected surgeries, and enduring pain, yet it’s also a journey filled with profound blessings and a deeper appreciation for life.
Recently, I faced an unexpected and urgent challenge. After having undergone two emergency surgeries on my right eye in August and December last year, I found myself needing emergency surgery on my left eye just yesterday 21.06.24. This sudden need for medical intervention is a reminder of the random and unpredictable nature of living with a rare disease and life in general. It’s these moments that test our strength and resilience, forcing us to adapt and push forward despite the pain and uncertainty.
The constant pain from lesions at the base of my skull and occipital bone is a persistent companion. It’s a type of pain that can be both physically and mentally exhausting, often reminding me of the fragility and unpredictability of life. Yet, amidst this pain, I find a source of humility and gratitude. I am acutely aware that, despite my struggles, there are others who face even greater challenges. This awareness keeps me grounded and fuels my determination to make a positive impact in the lives of others.
Living with a genetic rare disease has taught me to appreciate the small moments of joy and the everyday blessings that many might take for granted. It’s in the simple acts of kindness, the support from loved ones, and the ability to continue serving others that I find my strength. These experiences have shaped my perspective, allowing me to see beyond my own pain and focus on the greater good.
Service to others has always been at the core of my journey. My personal challenges have only deepened my commitment to this mission. I understand the importance of support, empathy, and community, especially for those who are navigating the complexities of rare diseases. It is this understanding that drives me to amplify the voices of the vulnerable and to lead with kindness and compassion.
In moments of hardship, I remind myself of the blessings that come with each new day. These blessings are not always grand gestures or monumental achievements; often, they are found in the resilience we build, the connections we forge, and the lives we touch along the way. My journey has taught me that even in the face of adversity, there is always room for gratitude and growth.
To anyone else living with a rare disease or facing your own battles, I want to share this message: Embrace the unexpected, find strength in your struggles, and never lose sight of the blessings that surround you. It’s through these experiences that we discover our true resilience and our capacity to make a difference.
Transforming Hope Through Action
