Living with a rare disease like Common Variable Immune Deficiency (CVID) is a journey filled with challenges, but also with moments of resilience and hope. My own journey with CVID began with childhood struggles, as chronic hives plagued my early years. However, it wasn't until adulthood that the full extent of my condition became apparent.
Year after year, I found myself falling increasingly ill. By the end of 2008, pneumonia had become a frequent visitor, striking me down six times in just one year. The turning point came on New Year's Eve when I was rushed to the hospital, struggling to breathe. As I lay there, surrounded by my six young children, ranging from 8 years to a newborn, I made a solemn vow to change things. I couldn't bear the thought of my kids witnessing their mother's continual decline. They deserved a healthy mom, and I was determined to make that a reality.
Seeking answers, I embarked on a series of appointments and tests with a pulmonologist in 2009. The grim possibility of lung cancer loomed as my symptoms mirrored its advanced stages. A lung biopsy was deemed necessary to confirm the diagnosis. However, the results brought an unexpected revelation: an interstitial lung disease was the culprit behind my deteriorating health. Treatment with prednisone provided some relief, but it wasn't the end of my journey.
Upon relocating to Washington, I found a new pulmonologist who finally uncovered the root cause of my troubles: a primary immune deficiency. The diagnosis explained why my body couldn't naturally produce immunoglobulins, essential components of the immune system. With this understanding, a new chapter of care began. Regular infusions of IVIG (intravenous immunoglobulin) every 3-4 weeks became a lifeline, bolstering my compromised immune system and minimizing the impact of other illnesses.
Today, thanks to ongoing treatment and vigilant medical care, my condition is well-managed. Minor setbacks still occur, but they pale in comparison to the battles I faced before. My journey with CVID has taught me resilience, gratitude, and the importance of advocating for rare disease awareness.
If you or someone you know is living with a rare disease or a primary immune deficiency like CVID, know that you're not alone. Resources and support are available to help navigate this challenging journey. Here are some resources for rare diseases, and here are resources specifically for primary immune deficiencies.
This is my personal story and is not a sponsored ad for any organization. The links provided are my personal suggestions and are not associated with Macaroni KID or its affiliates.
