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Shefit is proud to be partnered with Beautiful You MRKH Foundation, Inc., a portion of all our sales on our Beautiful You 4-Pack Headbands is donated to BYMRKH and are available for purchase on Shefit.com. Today's guest blog comes from a co-founder of MRKH, Amy Lossie.
My name is Amy Lossie, and I am one of the co-founders of the Beautiful You MRKH Foundation, Inc., which we fondly call BYMRKH. BYMRKH turned 5 in August, and we are thrilled to be a part of the Shefit family.
When I was diagnosed with MRKH at the age of 16, my whole family was in shock. None of us had ever heard of a condition where the reproductive tract failed to develop properly. At a time when all I wanted to do was be like everyone else, I was so, so different. I would never have a period, I could never carry a child, and I needed a medical intervention to have sex. I was unlovable, a freak. So many thoughts swirled through my head, as I wondered what the future now held for me.
That’s a lot for a 16-year old to process. Isolated from friends and family, I felt ashamed. My world became smaller; my circle of friends shrunk, and I refused therapy. I pushed MRKH out of my mind and coped as best I could, turning to my boyfriend to pick up the pieces.
I graduated college and earned a PhD in Genetics, and that boyfriend supported me emotionally through each move and transition. My PhD gave me more than scientific training and a drive to succeed. I earned self-respect, self-worth, and a deep belief in my abilities. I found my voice and learned to stand up for my beliefs, to fight when necessary. Most importantly, I unearthed the courage to disclose my MRKH to a close friend and colleague. Telling her halved the weight of this secret. Was being open about MRKH a way to accept this diagnosis?
In my 30s, that boyfriend (now husband) and I moved to the city. We traveled. We focused on our careers, our relationship, our friendships. We built a fulfilling, happy life.
After accepting a faculty position in a Midwestern college town, I became active in the MRKH community. I reached out to colleagues and disclosed my MRKH to a room full of physicians and surgeons who treat conditions like MRKH. Coming out with MRKH professionally was one of the most freeing moments in my life. It empowered me to thrive, to embrace this diagnosis, to live my life on my terms! I didn’t have to have children to have a great life. I already built my ideal life; it was time to enjoy it!
In August of 2012, Christina Ruth and I founded the Beautiful You MRKH Foundation, as a community where all affected by MRKH would have a home. The mission of the Beautiful You MRKH Foundation is to create a supportive community that partners with healthcare professionals to increase awareness and empower women of all ages with MRKH to feel beautiful, just as they are. We spent hours talking to people affected by MRKH. The stories centered on shame, isolation, fear. One of the long-term goals of BYMRKH is to decrease the shame and stigma associated with this diagnosis. BYMRKH strives to accomplish this by promoting self-esteem, and empowering people born with MRKH to embrace their beauty, just as they are. Through all of this, I found my world expanding. I met new people from all over the world, forged new relationships and my circle grew. What once caused my world to retreat was now responsible for making my life bigger, and it felt GREAT!
In August of 2014, I was diagnosed with Stage IIIb colon cancer. “Will I survive this? What would happen to BYMRKH if I don’t? What was the transition plan? Who can take over my role?” These fears haunted me. But, the MRKH Family carried me through! Hundreds of people from around the world sent cards, care packages, emails, texts and private messages every day for six months! The love so many people gave eased the most difficult days and erased negative emotions.
Chemo took its toll. I lost muscle mass and could barely climb a set of stairs. I walked my dog twice a day to build up strength. Six months after finishing treatment and one-year post surgery, I found myself in Huntington Beach, CA, listening to Bonner Paddock talk about avoiding, accepting, and challenging his cerebral palsy through conquering Mt. Kilimanjaro and the 2012 Ironman World Championship in Kona. A vision of the next chapter of my life unfolded; I would focus on challenging myself physically. I hadn’t gone through six months of nausea, fatigue and illness to watch life go by. I was going to become the strongest person I could possibly be, for me, for BYMRKH.
I returned to Maryland, and I started running for me. I am currently training for a 10K across the Bay Bridge to the Eastern Shore of Maryland. My motto is, “It doesn’t have to be perfect; it just needs to be done.” My only goal is to be stronger today than I was yesterday.
Shop our Beautiful You 4-Pack Headbands today at Shefit.com! a portion of all our sales on them will be donated to BYMRKH.