Guest guest Posted March 28, 2005 Report Share Posted March 28, 2005 Hi, I understand that RSS is 1 in 50,000 to 100,000 and those that show up as positive on upd 7 are 10% of that so quite possibly......one in a million!! Regards Alison (mum to 3yrs and Charlie 21 months RSS) > I've been asked this so many times during the past 20 years since my RSS > daughter was born - > > how often is a wonderful, beautiful, bright, interesting, challenging RSS > child born. I feel like Ada is 1 in a million but i'm probably way off in my > numbers. Has this ever been figured out or reported? > > If so, i'd love to know > thanks! > Signe > Mom to Ada - 19.5 years old > 4ft 9 " and 78 lbs of mightiness Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2005 Report Share Posted March 28, 2005 im wondering what the oldest person with rss is known to date ..my son is now 22 and i would like to meet others his age and ask their advice about coping with rss. thanks grace Re: how common is RSS?? Hi, I understand that RSS is 1 in 50,000 to 100,000 and those that show up as positive on upd 7 are 10% of that so quite possibly......one in a million!! Regards Alison (mum to 3yrs and Charlie 21 months RSS) > I've been asked this so many times during the past 20 years since my RSS > daughter was born - > > how often is a wonderful, beautiful, bright, interesting, challenging RSS > child born. I feel like Ada is 1 in a million but i'm probably way off in my > numbers. Has this ever been figured out or reported? > > If so, i'd love to know > thanks! > Signe > Mom to Ada - 19.5 years old > 4ft 9 " and 78 lbs of mightiness Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2005 Report Share Posted March 28, 2005 dear mom to ada..hi! i am mom to brandon who is now 22. id love email from you and to share lives. gracewithin@... thanks grace how common is RSS?? I've been asked this so many times during the past 20 years since my RSS daughter was born - how often is a wonderful, beautiful, bright, interesting, challenging RSS child born. I feel like Ada is 1 in a million but i'm probably way off in my numbers. Has this ever been figured out or reported? If so, i'd love to know thanks! Signe Mom to Ada - 19.5 years old 4ft 9 " and 78 lbs of mightiness Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2005 Report Share Posted March 29, 2005 Grace- This list has some WONDERFUL adults that help with questions and they are all female. Since I have a son I have often wished for either an adult male w/ RSS or parents. I would love to pick your brain about and growing up with RSS. Mimi Mom to Isaac (14 mos, RSS, Hypothyroid, Sinthroid, Periactin, Zantac..just bought our first package of size 3 diapers ((yeah))) and one on the way in late September > dear mom to ada..hi! i am mom to brandon who is now 22. id love email from you and to share lives. gracewithin@c... thanks grace > how common is RSS?? > > > I've been asked this so many times during the past 20 years since my RSS > daughter was born - > > how often is a wonderful, beautiful, bright, interesting, challenging RSS > child born. I feel like Ada is 1 in a million but i'm probably way off in my > numbers. Has this ever been figured out or reported? > > If so, i'd love to know > thanks! > Signe > Mom to Ada - 19.5 years old > 4ft 9 " and 78 lbs of mightiness > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2005 Report Share Posted March 29, 2005 Grace, Back when I started the Association for Children with RSS (16 years ago and then it got too big so Cathy Walbridge joined up with MAGIC after taking over), I had a man in his 20's who had RSS. I do not know where he is now. Have you checked out the yahoo groups site for RSS People? That is a site for adults and teens with RSS. You would stand a good chance of meeting other people in their 20s and older. I know there are quite a few. Jodi Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2005 Report Share Posted March 30, 2005 When I had my son the Drs. here said that he was literally 1 in a million. They also told me that that was also the chance of his survival. However they are probably wrong considering he is still with me. > >Reply-To: RSS-Support >To: RSS-Support >Subject: how common is RSS?? >Date: Mon, 28 Mar 2005 22:04:33 -0500 > >I've been asked this so many times during the past 20 years since my RSS >daughter was born - > >how often is a wonderful, beautiful, bright, interesting, challenging RSS >child born. I feel like Ada is 1 in a million but i'm probably way off in >my >numbers. Has this ever been figured out or reported? > >If so, i'd love to know >thanks! >Signe >Mom to Ada - 19.5 years old >4ft 9 " and 78 lbs of mightiness > > Quote Link to comment Share on other sites More sharing options...
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