Guest guest Posted April 2, 2005 Report Share Posted April 2, 2005 Hi Guys, Just remembering a thread recently about gynecological issues with RSS women. Do any of you have or know of other RSS women who have had children?? Do you know if there is an increased incidence of RSS children born to RSS adults? Thank you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2005 Report Share Posted April 3, 2005 Hi - To my knowledge, of the current RSS Adult online group (41 people), there are only two females, Bree in Australia (who hasn't logged on in years) and Laurie T. in the US, who has said she has given birth and one male, , who has fathered a child. Some of the others might consider themselves to be a little on the " young " ide to give birth, some don't want to have children at this time, etc. So it's really hard to tell if the incidence of RSS adults with children. But I don't there there are any statistics or studies about RSS and reproduction...there only seems to be interest in childrens' matters, not adults'. -Sharon- Orlando FL Just an RSS kid who grew up Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2005 Report Share Posted April 3, 2005 Hi , In addition to the parents that Sharon mentioned, I know of 2 more mothers. (Kate, are you still out there?) All of their kids are of " normal " height. However, there are also some women on the adults site who are unable to, or are having difficulty conceiving. My suggestion to mothers of RSS daughters is to get a full GYN work-up done when your daughters are around puberty. Then they'll have time to process any info before they " meet Mr. Right and decide to have 6 kids " (the words of my GP when I was in High School). -Ana (RSS, I'm almost 28 but I have no intention of thinking about kids until after I finish this darn PhD...) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2005 Report Share Posted April 3, 2005 hi victoria, its kim rss adult, this problem of lack of research into rss adults /especially women seems to have been slowly rumbling on for a while now . i think if you look at earlier posts it has been discussed at length and us on the adults site have been debating what steps to take in regard to collating info about rss adults for a coule of months now. I think it was jennifer that said that it was thought by the medical profession that an rss woman would not have an rss baby, ie miscarry in early pregnancy, But she will maybe post that info again. But i hope that some of the rss adult mothers will be able to help you out in due course. I totally agree with that you could get your rss daughter examined by a gyne when she is older if you wish, as if there are issues or worries she will be able to explain these issues and any treatments to a partner before starting any kind of family planning or intimacy. hope this helps nightnuse4babies wrote: Hi Guys, Just remembering a thread recently about gynecological issues with RSS women. Do any of you have or know of other RSS women who have had children?? Do you know if there is an increased incidence of RSS children born to RSS adults? Thank you, --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2005 Report Share Posted April 3, 2005 > Hi, I loved my level 2 ultrasound dr. He was a former obgyn and is friends with the woman who writes all of the ultrasound diagnostic books! I would be willing to try nad contact him and see if he would suggest someone who might be willing to research it... > Hi - > > To my knowledge, of the current RSS Adult online group (41 people), there are only two > females, Bree in Australia (who hasn't logged on in years) and Laurie T. in the US, who has > said she has given birth and one male, , who has fathered a child. Some of the others > might consider themselves to be a little on the " young " ide to give birth, some don't want > to have children at this time, etc. So it's really hard to tell if the incidence of RSS adults > with children. But I don't there there are any statistics or studies about RSS and > reproduction...there only seems to be interest in childrens' matters, not adults'. > > -Sharon- > Orlando FL > Just an RSS kid who grew up Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2005 Report Share Posted April 5, 2005 Hi - I wanted to mention that my condition, Mayer-Rokitansky-Kuster-Hauser (MRKH) syndrome is not as uncommon as I thought. It is a congenital absense of the uterus and vagina. The online support group that I joined has about 622 women who have joined since 2000 I believe. It occurs in 1 in ever 5000 women and it could be any woman. I don't think it's a disorder that is specifically related to RSS, but I'm not sure. You can look MRKH online and read up about it. MRKH is not talked about so much because it is such a sensitive topic and there are so many psychological and emotional issues related to it. It is something that is hidden unlike RSS...I can't hide the fact that I'm short but no one would know that I don't have a uterus and a very, very tiny vagina. I hope this isn't too much information, but we can't learn about these things if we don't talk about them you know? I could do surrogate parenting but I'd rather adopt...there are plenty of children in the world who have been orphaned or abandoned and need someone like me to take care of them. I must say for myself, finding the support groups for both RSS adults and MRKH have been so liberating for me. I feel so empowered. I hope this helps. Claire > > Hi Guys, > > Just remembering a thread recently about gynecological issues with RSS > women. Do any of you have or know of other RSS women who have had > children?? Do you know if there is an increased incidence of RSS > children born to RSS adults? > > Thank you, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2005 Report Share Posted April 5, 2005 Hi Claire, When you are ready to adopt I can let you know what we did! This is our third time! Thank you so much for sharing. Very informative! J Re: for RSS adults Hi - I wanted to mention that my condition, Mayer-Rokitansky-Kuster-Hauser (MRKH) syndrome is not as uncommon as I thought. It is a congenital absense of the uterus and vagina. The online support group that I joined has about 622 women who have joined since 2000 I believe. It occurs in 1 in ever 5000 women and it could be any woman. I don't think it's a disorder that is specifically related to RSS, but I'm not sure. You can look MRKH online and read up about it. MRKH is not talked about so much because it is such a sensitive topic and there are so many psychological and emotional issues related to it. It is something that is hidden unlike RSS...I can't hide the fact that I'm short but no one would know that I don't have a uterus and a very, very tiny vagina. I hope this isn't too much information, but we can't learn about these things if we don't talk about them you know? I could do surrogate parenting but I'd rather adopt...there are plenty of children in the world who have been orphaned or abandoned and need someone like me to take care of them. I must say for myself, finding the support groups for both RSS adults and MRKH have been so liberating for me. I feel so empowered. I hope this helps. Claire > > Hi Guys, > > Just remembering a thread recently about gynecological issues with RSS > women. Do any of you have or know of other RSS women who have had > children?? Do you know if there is an increased incidence of RSS > children born to RSS adults? > > Thank you, > > _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2005 Report Share Posted April 6, 2005 Claire - I would love if you could hook up with Ellen of MAGIC. I can give you her email address if you want (email me privately). She heads up our genital-reproductive anomalies division - and you are right, there are far more adults and children out there with anomalies than one would guess. However, most people are not comfortable talking about things. Ellen would love to talk with you, I am sure. And you could be a great role model for parents who are just finding out about similar situations with their own daughters. Jenn > > > > Hi Guys, > > > > Just remembering a thread recently about gynecological issues with > RSS > > women. Do any of you have or know of other RSS women who have had > > children?? Do you know if there is an increased incidence of RSS > > children born to RSS adults? > > > > Thank you, > > > > > > > > > > _____ > > Quote Link to comment Share on other sites More sharing options...
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