A letter to my younger self, who faced a new world of hemophilia

Life experience forged by adversity prompts wise words for a bewildered child

Dear 11-year-old me,

Life might feel overwhelming at this moment, but remember, you are stronger than you realize. The road ahead will present challenges, but they will shape you into an incredibly resilient person.

Your journey with your period has begun, and I know it’s tough. Those monthly struggles will persist for over two decades, but you’ll learn to manage and find ways to make it more bearable. Little did you know, your bleeding is not ordinary. Anemia will be a companion due to excessive blood loss, but your determination will guide you toward understanding and managing it.

Remember the tests that puzzled you last year? Those inconspicuous cuts made on your forearm marked the time to form a clot and held important clues. You’ll come to understand that your blood doesn’t clot normally. This revelation will explain the difficulties you faced when your tonsils were removed.

Von Willebrand disease and hemophilia B will become part of your life, a challenge you’ll conquer with time. Your diagnosis will introduce you to a world of medical procedures and treatments; fresh frozen plasma, cryotherapy, and blood clotting factor products will become part of your vocabulary.

Some doctors might tell you not to worry, because “hemophilia doesn’t affect girls.” They will say you are a carrier of hemophilia B, which will be puzzling because hemophilia doesn’t run in your family. Trust your instincts — you’ll discover later that you have hemophilia, and factor IX will be an important part of your treatment plan.

Knee troubles lie ahead and will cause you pain and prompt many tears. Your time in ballet and tap dancing will become distant memories, but remember, dancing isn’t the only way to express yourself. Two knee surgeries during high school will test your patience and adaptability. You will frequently miss school. Algebra may pose a challenge temporarily, but setbacks won’t define you.

Through the struggles, swimming will be your refuge. Your connection with water will help you flourish, even if your knee problems hinder you from joining the varsity team. You’ll become the boy’s team manager and lead the girls as junior varsity team captain. The aquatic world will empower you.

However, challenges will persist. You will dislocate your shoulder and need to quit competitive swimming in college, but just like before, you’ll find a way to adapt. Remember, you are not defined by the hurdles you face but by your resilience in overcoming them.

You will come to realize that you were inadvertently exposed to HIV and hepatitis during the administration of those blood products that were meant to treat your bleeding issues. Miraculously, you will escape infection despite this close call. This experience will spark a profound inspiration within you.

Motivated by your own brush with that horrible virus, you will choose to volunteer at the largest camp for children grappling with AIDS. The interactions you will share with these remarkable young people will deeply touch your heart and leave an indelible mark on your life. The friendships you forge will become invaluable treasures, enriching your perspective and reminding you of the strength and resilience that can flourish in the face of adversity.

Believe in your strength, embrace your uniqueness, and cherish every experience. The road ahead is winding but will lead you to places you never imagined.

With unwavering support and understanding,

Your older self