Tuesday, July 31, 2012
Turns Out It Has A Name
So, not only does this "situation" have a name, turns out I am not the only person in the world who has it. Its called Mayer-Rokitansky-Kuster-Hauser Syndrome...try saying that three times fast. From now on I will just call it MRKH syndrome, it seems much easier. The cause is unknown, but what doctors do know is that when a fetus grows in a mother's uterus many systems develop, including the reproductive system, which happens to include the uterus, vagina, Fallopian tubes, and ovaries. These are formed during the first few months in the mother's womb. So basically this system starts to develop but doesn't completely finish. Because it can happen at different stages, every person who has MRKH has it a little differently. There are a few other symptoms that come along with it for some people; hearing problems, skeletal abnormalities, kidney abnormalities, or being born with only one kidney. I think I have hearing problems, but that hasn't actually been proven. Seems kind of weird I know...but someone once described it to me like being born without a finger (this makes me feel better because I know so many people born without a finger).
I bet you are wondering how many people this actually effects. Once I tell you, you are going to feel even more special that you know me. It effects about 1 in every 5000 women. Seems kinda crazy because do not even know 5,000 people! But, I'm not going to lie...I feel kinda special, I have (or don't have) something that you don't.
There is not a lot of information out there about MRKH. It was discovered at John Hopkins in Massachusetts, but a lot of doctors dont even know about it. I had to drive to a Dr. hours away to get any kind of information. I lucked out because it turned out the Dr I went to knew a guy that worked at John Hopkins who knew a guy, who knew a guy, who knew a guy... Anyway, I was finally able to get some answers.
Here is an interesting study done on MRKH