mullerian aplasia - Rare Disorders Message Board

aez · 08-19-2003, 09:33 PM

hi,my name is april i was just wanting to know if anyone else has this disorder.i just wanted to talk to someone else who also has this.i can not find anyone else with this.thank you

zuzu8 · 08-19-2003, 10:48 PM

The National Organization for Rare Disorders has something that might be of interest to you:
[url="http://www.rarediseases.org/nord/programs/networking"]http://www.rarediseases.org/nord/programs/networking[/url]

Good luck,

zuzu xx

aez · 08-19-2003, 11:35 PM

thank you for your reply.april

Autumn Angel · 08-20-2003, 12:08 PM

Hey April and ZuZu thats where I got all my info on my daughters condition NORD they sent me tons of info by mail. My daughter has Mayer Ratinsky Kuster Hauser Syndrome it is very similar to Mullerian Aplasia. My daughter was diagnosed at 16 when she failed to get her period. Having 3 daughters this was very scary since this is genetic or can be. But my 19 yr old daughter got her period at 11 years of age and my 12 year old daughter just got her first period last month so I know they didnt inherit this too. My oldest daughter is now almost 22 years old and went through ALOT of dialation therapy at The Hospital for Sick Children in Toronto. A little info about what my daughter has...its affects 1 in 10,000 births of baby girls and ocurs at 5 weeks gestation and it is not because of anything a woman does during her pregnancy it says that both parents have to carry the ressesive gene. Anyway if I can be of any help let me know. Take care.
Autumn.

aez · 08-20-2003, 01:18 PM

thank you so much for writing i was feeling so alone.i can't find anyone else with this i was begining to think i was the only one.i am sorry for your daughter.i found out when i was 15.my mother has always felt so bad about it she thinks it's her fault even after the doctor said that it was'nt.but my life is pretty normal anyway.i'm 28 married to the man i met in jr. high school.we would really love to have one child but i have no one to carry it for me.but sometimes i think it's for the best with the way the world is with all the dieases and drugs,guns,and violence.but when i see a pregant woman i can honestly say it makes me sad to know that i'll never get the chance to feel how it feels to be pregant or to hear a tiny voice say mommy i love you.well thanks for listening.i would really like to keep in contact.on this rare disorders.tell your daughter i'll always think about her and wish her well.thank you april.