When I first found out that I had MRKH, I was told that 1 in 4,500 women have this medical condition. Really? Could that be right? I remember thinking, I’m all alone with this and no one will ever understand how I feel. However, I soon discovered that I was very wrong.
About a year and a half after my diagnoses, I was at one of my regular appointments for MRKH when my doctor told me about a conference that was going to be held at the University of Michigan Hospital. The seminar was for women with MRKH and their parents in order to meet with one another and various physicians to learn more about MRKH and other’s experiences. Initially, I thought, “Why would I go? I have already learned everything there is to know about MRKH online and I would probably be the only girl to show up.” However, after thinking a little longer and conversing with my mom, we decided “why not?” We had nothing to lose; I had already told all of my close friends and family about MRKH, I might as well see what this conference is all about.
My mom and I anxiously drove to Ann Arbor not knowing what we were going to be getting ourselves into… I was relieved when I noticed that three other girls with MRKH showed up at the conference along with their parents. From the moment I met these other girls, I immediately felt a bond with them. For the next few hours, we were able to share our individual stories and struggles with one another and had an educational lecture from doctors and psychologists about everything that MRKH entails. I discovered there was a lack of accurate information about MRKH online and I truly did not know as much as I thought about MRKH prior. Thankfully, one of the other MRKH women at the conference provided me with the Beautiful You MRKH Foundation website and Facebook page where I was able to find a great amount of valid, educational information regarding this medical condition. Not only did it provide me with more accurate medical information, it also gave me the opportunity to meet online with various women throughout the entire world who have gone through similar obstacles as myself.
Not long after this conference, I had a strange Facebook message from Miss Michigan 2013. First, I was very confused why a beauty queen would want to talk to me, or how she even found me. While reading her message, I was in complete shock. Not only did she have MRKH like me, but also attended the same university as me and was simply looking for a friend that could relate to her. I started to really question the 1 in 4,500 statistic…If one of Michigan’s most beautiful and talented women had MRKH, who else could be near me had this “rare” condition?
In May 2013, I attended MRKH Day at University of Michigan, but this time things were a little different. The drive to Ann Arbor was a lot more exciting, between my mom, my dad, and myself. We were all eager to make some new friends and meet up with all the women from the past conference, Miss Michigan, and the cofounder’s of Beautiful You MRKH Foundation. To my surprise, an entire conference room was full of women with MRKH and their parents! I was in complete awe of the turnout. After settling in our seats, I heard one of the girls next to me say “Hey there, Amanda! I think we know each other…” Sure enough, it was someone that lived within 5 minutes of my house. We had grown up playing sports against one another, had similar friends, and have been to various parties at the same time; yet, somehow neither of us knew the other had MRKH. There are no words to describe the excitement that I experienced when I realized someone else, from the neighboring small town of where I lived, knew exactly what I was going through. My friendship with her is like no other; where most friends try their best to understand what I am going through, she actually can fully understand and relate to the same daily struggles, and is within just a short drive away.
Between the MRKH conferences and the Beautiful You MRKH Foundation, I have been able to gain a sisterly bond with not only women nearby, but also women throughout the entire world. I have come to realize that even if it is scary, doing something out of my comfort zone can be rewarding. If I would have continued to feel sorry for myself by thinking I was all alone and that no one would ever understand, I may not have ever met any of the wonderful women that have become my lifelong friends.
My advice to women with MRKH, or anyone struggling with feelings of isolation is to simply reach out to another person, even if you’re a little nervous about their judgments. Who knows, you may have more in common than one would ever think. It may take you out of your comfort zone to think about attending a conference, but after I entered the room and saw so many other women like me, it was worth it.