Last Saturday I helped register participants at our 6^th annual MRKH conference. MRKH (short for Mayer-von-Rokitansky-Kuster-Hauser Syndrome) is a rare disorder which is present at birth and is estimated to affect 1 out of every 4,000-5,000 female babies’ reproductive tracts. I’ve helped at past MRKH conferences and noticed that a steady number of families still attend. Some of the people that I registered mentioned that this was their first conference; but for others, it was their fourth. Obviously if they keep coming back, this conference must be useful to them.

Many families also travel from a distance to attend our conference in Boston. For example, we had attendees from Tennessee, Missouri, Pennsylvania, New York, New Hampshire, Florida, and New Jersey. There were also families all the way from Ireland, Singapore, and Australia. Personally, an event would have to be very beneficial and significant for me to travel that far solely for a conference.

Although I didn’t participate, I could tell that the girls really enjoyed the support groups and each others company. I’m sure that Dr. Laufer’s presentation on MRKH was very helpful for both the teens and their parents, but I think that the girls mainly attend the conference for each other. They make the journey to meet other girls that have the same diagnosis. I would imagine they desperately want to talk to other teens that actually understand them because they share similar concerns.

From an outsider’s perspective, I really think that girls with MRKH enjoy coming to the conference and meeting others who can relate to what they are going through. I’ve also noticed that the teens are usually quiet and shy in the morning before they go to their first support group meeting, but by the end of the day, they leave talking to each other, which is great because it builds their support system.

-Erica