Stacey Brown

This past November, I was honored to represent Beautiful You MRKH at the 2nd Annual RARE Health Equity Summit. To be honest I felt anxiety around the term “Rare Disease” The rare part felt lonely and justified how isolating this journey can be. There was such a negative connotation with the word disease. In the world that word causes fear. I thought this was just another box that people can put me in, another label.

Then I met people with various rare diseases, who found community and courage within this term. We had round table discussions about health disparities, disparities within genetic testing, and medical gaslighting. In a room full of strangers I felt seen and safe. Their vulnerability inspired me to share my own story. It takes a lot of courage to get on a microphone and say “I don’t have a uterus”. I was grateful for this newfound community that welcomed me with open arms.

I sat at a table with women who looked like me and we had conversations that left me both inspired and motivated. It made me think about how I could impact research around MRKH and ask the hard questions. Like “What is missing in MRKH research?” or “How does bias influence who has access to surgery or a uterus transplant?” and “How do we transform education to empower rather than instill fear and shame?”. I want to make sure we showcase the diversity within our community. I want to be a speaker, an advocate, and a storyteller. The Summit taught me how to dream big and it taught me how to find the beauty in being rare.