Navigating Life: A Journey of Diagnosis, Care, and Personal Growth
By Christine Bond
Introduction: As a child, my life seemed relatively normal, with a typical family, good friends, and attending public school. However, there were a few things that made my childhood different from others. Frequent nosebleeds, unexplained injuries requiring surgery, and recurrent ankle sprains were just some of the signs that would eventually lead to a life-changing discovery. It was not until the birth of my second child, Tony, that hemophilia B entered our lives. Little did I know that this diagnosis would uncover not only Tony’s condition but also my own. This article chronicles my journey with hemophilia B, Hashimoto’s thyroiditis, and the challenges I faced along the way.
A Quest for Diagnosis: After Tony’s diagnosis, I began researching hemophilia B and realized that I might also have the condition. Frustratingly, his treatment center offered no assistance in diagnosing me, so I turned to my primary care doctor for help. Testing my factor IX activity level revealed shocking results of 18, confirming my suspicion of having hemophilia B. However, the treatment center’s response was underwhelming, dismissing the importance of my condition, and failing to provide the necessary support for emergencies.
Advocacy for Myself and My Health: Undeterred, I persisted in seeking the care I needed. I pushed for an appointment with an adult hematologist at my son’s treatment center and shared my concerns about joint issues, previous injuries, and problematic menstrual bleeding. Unfortunately, the hematologist’s response was limited to suggesting birth control pills as a solution. Unsatisfied with this option, I continued my quest for proper care.
Finding the Right Treatment: Through interaction with others in the hemophilia community, I learned about a hematologist nearby who treated women with hemophilia. Desperate to receive the care I required, I promptly scheduled an appointment. This hematologist recommended shortacting factor infusions during my period and injuries, which significantly improved my condition.
Later, I discovered another doctor in Western Pennsylvania who treated women with longer-acting factor prophylactically. This physician advised me to switch to a longer-acting factor once per week, minimizing vein damage and ensuring sufficient coverage throughout the week.
Building a Healthier Body: Empowered by my improved treatment regimen, I gradually realized the importance of prioritizing my overall health. Having experienced fewer injuries and bleeds, I became more comfortable exercising and subsequently felt motivated to lose weight. However, my journey towards weight loss was complicated by another condition I had called Hashimoto’s thyroiditis. This autoimmune disorder, coupled with insulin resistance, posed additional challenges.
The Importance of Finding the Right Doctor: Understanding the need for specialized care, I sought out the best doctor in my area to address my thyroid condition. This doctor diagnosed me with insulin resistance and prescribed Metformin, a medication commonly used for type 2 diabetes. Metformin helped control my blood sugar and kick-started my weight loss, but my doctor informed me that a GLP-1 medication would be added to my treatment plan for further weight loss.
Overcoming Obstacles and Achieving Progress: Despite initial concerns about potential stomach issues, I trusted the process and began taking both Metformin and the GLP-1 medication concurrently. Additionally, I engaged in physical therapy to improve joint health and build muscle, working towards my goal of losing weight. With the assistance of a continuous glucose monitor, I gradually shed pounds and built muscle, experiencing improved overall well-being.
Conclusion: My journey with hemophilia B and Hashimoto’s thyroiditis has been one of self-discovery, resilience, and personal growth. Rather than viewing these conditions as burdens, I see them as opportunities to learn and overcome challenges.
