MRKH Conference 2012

I am one in 5,000!A couple of weeks ago I helped out at the annual MRKH conference here at Boston Children’s Hospital. For those who don’t know, MRKH (Mayer Rokitansky Kuster Hauser Syndrome) is a disorder that occurs in 1 out of every 5,000 live female births where the baby is born with an incomplete reproductive tract. This annual conference is for the young women, their parents, and family members, and is a way to learn, share experiences, and make new friends that are going through the same things.

Helping out at the conference was an amazing experience. I could feel the excitement and nervousness while people piled into the lobby. It started out with an informational lecture by Dr. Laufer (a specialist in the field) and then participants were split up into discussion groups. This was what I enjoyed the most. I love helping people and that’s exactly what the conference is for.

You can’t just look at someone and know that they have MRKH, and because of this, many girls had never met someone else with the syndrome before attending the conference. I can’t imagine what it must have felt like before the conference for the girls who didn’t know anyone else they could relate to. I think the most important part of the conference is that it gave these young women the ability to meet people who share some of the same dilemmas, obstacles, and realizations.

Hearing the stories from all of the participants was eye opening. Discussion topics ranged from what it felt like when they received their diagnosis, to not knowing who to trust when they were ready to tell their friends and significant others about MRKH. The girls were able to talk through everything and help each other out by sharing personal experiences or offering advice.

Being part of the conference reinforced my desire to work in the health care field so that I can help others. I hope the experience was as gratifying for all those who attended the conference.