A Letter to My Vascular Malformation

Dear Vascular Malformation,

As I sit down to write this letter, I find myself reflecting on the journey we've shared over the years. You’ve been a part of my life for as long as I can remember, and while our relationship has had its challenges, I want to take a moment to celebrate the growth and resilience that have emerged from our time together.

I still remember that day at the hospital, sitting with my parents, wearing my light-up sneakers and eagerly waiting for the doctor. I kept hitting my feet against each other to make the sneakers sparkle. Finally, the doctor came in, smiled at me, and asked, “Sofia, how old are you?” I smiled and waved four fingers in the air, excited to show that I could now hold up four fingers instead of three. That day marked the beginning of our journey. While it was filled with uncertainty, it also set the stage for the incredible strength I would discover within myself. The doctor mistakenly identified you as Pigmented Villonodular Synovitis (PVNS), a rare condition that affects the synovial membrane, which lines the joints and tendons. I was too young to fully comprehend what was happening, but I could tell that you worried my parents more than anyone. It was three years later that we finally learned your true name: Vascular Malformation (VM).

As I grew older, I faced the reality of living with you. I loved sports: soccer, basketball, lacrosse, cross country, tennis. All of my friends and I played on teams together, but I was always one step behind. The pains that were only mild at the very beginning were now intense. I made sure to wear my knee brace throughout the day to minimize the chances of having to sit out mid-game. I remember receiving weird looks at sports camps when I couldn’t finish the mile because my knee locked up, making it impossible to bend without triggering excruciating pain. They had no idea what I was dealing with. After long days at school, even without attending practice, I would come home and immediately need to ice my knee because it had swollen from simply walking. You made me feel defeated and less than my peers because I couldn’t do the “normal” things that a young, healthy girl should be able to do.

Noticing the increase in pain levels and frequency, my parents took me to a specialist at Lenox Hill Hospital in New York City for treatment. After numerous MRIs, ultrasounds, and consultations, my family and doctors decided it was time to begin treatment. I had my first sclerotherapy when I was eleven, my second also at eleven, my third at twelve, my fourth at thirteen, and my fifth this past summer at sixteen. Each sclerotherapy was an attempt to reduce your impact on my life. While some of the procedures significantly alleviated my pain and allowed me to go through the day without discomfort, many had little effect. However, these experiences taught me the importance of hope and resilience. I learned that every setback was an opportunity for growth, and I began to see the postives in my unique journey.

Over time, the discrepancy in muscle mass between my quads increased. As more people pointed out the growing differences, I became insecure and resented you. When I looked in the mirror, it only highlighted my flaws, making it difficult to accept my body. I wanted athletic validation from others because I believed that if you weren’t present, I could reach my full athletic potential. So, even when I experienced pain, I kept pushing through. I persevered when every bend sent shockwaves of pain through my leg. I continued despite my knee swelling to the point where my left knee was twice the size of my right. I especially kept going when people urged me to stop.

In high school, my mindset shifted completely. I grew stronger mentally and was no longer looking for external validation. Through physical therapy, I found a supportive community, in addition to my immediate family, that encouraged me to focus on my progress rather than my limitations. My physical therapist acknowledged my determination to improve, succeed, and push through the pain. It dawned on me that you had given me the opportunity to work on myself, become the best version of myself, and find peace with both you and me. Although it was difficult, you taught me to find the silver lining in every situation. You have shown me the importance of empathy, reminding me that everyone has their own struggles. You have instilled in me a sense of consistency and dedication, teaching me to set goals and work toward them while respecting my limits. Most importantly, you have helped me cultivate self-confidence, allowing me to recognize my growth and progress. 

I have to admit there are so many days that I wish you didn’t exist. But I have come to appreciate the lessons you have imparted. I have learned so much about myself and who I want to be. I’ve always been told that you don’t define me. For a long time, I associated this with negative connotations, but I now believe that you do define me—in a positive light, as a source of strength and resilience. I now see you as a catalyst for my personal growth.

I look forward to continuing to grow and thrive, embracing every challenge and celebrating every victory along the way. I hope to inspire others to do the same.

With gratitude,


Sofia