As we commemorate Rare Disease Day on February 29, 2024, I find myself reflecting on my journey with Hereditary Angioedema (HAE). This rare and often misunderstood condition has been a constant companion since my middle school days, presenting challenges that only intensified as the years went by.
For the longest time, my struggle with HAE was a solitary one. The lack of awareness and understanding about this rare disease meant that I often had to conceal its visible effects. I would brush off my discomfort by claiming an upset stomach or tactfully avoiding social situations when my appearance became altered due to swelling.
It took an arduous decades to find a doctor who could properly diagnose and treat my condition. The relief of finally having a medical professional who understood the intricacies of HAE was immense. However, the financial burden that accompanied the necessary treatment was a barrier that seemed insurmountable for most of my journey.
It wasn't until the last three years that I gained access to life-changing medications, thanks to the invaluable support of foundations dedicated to alleviating the untenable costs of rare disease treatments. These organizations have played a pivotal role in making these essential medications accessible, allowing individuals like me to lead more normal lives.
The turning point in my journey brought about physical relief and a newfound sense of empowerment. No longer confined by secrecy, I could openly address my condition, raising awareness and dispelling the misconceptions surrounding Hereditary Angioedema. The courage to share my story stems from the support of dedicated rare disease doctors and researchers whose tireless efforts contribute to a deeper understanding of these conditions.
As we mark Rare Disease Day, let us acknowledge the importance of collective efforts in supporting individuals with rare diseases. The progress made in research, the dedication of medical professionals, and the role of foundations in easing the financial burden are all crucial elements in the fight against rare diseases. By sharing our stories, we contribute to a more compassionate and informed society—one that recognizes the resilience of those facing the challenges of rare diseases.
Even writing this now I have second thoughts about sharing because rare disease has a way of otherizing you this condition is just something I deal with not who I am as a person. My journey with Hereditary Angioedema has taught me the significance of advocacy and the relentless pursuit of knowledge. Together, let us work for a cure and continue to shine a light on the rare, making strides toward a future where no one has to endure their journey alone.