MRKH Conference 2009

2009 MRKH ConferenceThis past weekend Erica, Dennisse, and I helped out at Childrens Hospital’s 4th annual MRKH conference. Many of you may be wondering what these letters stand for. Mayer Rokitansky Kuster Hauser Syndrome (better known as MRKH) is a congenital disorder of the female reproductive tract, named after the doctors who discovered it. Only 1 in about every 5-10,000 females born has this condition, yet it typically isn’t diagnosed until a girl is about 15-17 years old.

Since the number of females who have this condition is relatively small, it is very important that girls with MRKH and their families do not feel isolated. That’s why the Center for Young Women’s Health and the Division of Gynecology at Children’s Hospital Boston offers this conference every fall – to bring teen girls and their families together for education and support. This past Saturday, girls came from all over the country to meet others just like them. There was also a teen and her mom who traveled all the way from Ireland! It was very nice to see all the girls and their families connecting with each other and sharing their experiences.

In the morning, the girls had the opportunity to attend a lecture on MRKH with their parents given by Dr. Marc Laufer, Chief of Gynecology. Following the lecture they attended a support group led by a nurse. Then they got to have lunch together, had time to talk amongst themselves, and got to participate in a workshop. The last session in the afternoon was health care panel where teens and their parents were able to ask questions to the faculty. The girls seemed to really enjoy the chance to meet each other and exchange contact information so that they could keep in touch. They really appreciated finding others who know what it feels like to have MRKH. All and all, the conference went wonderfully and the girls were very excited about the information they learned and the new friendships they had made.

Here is some more information MRKH.