Guest guest Posted July 29, 2004 Report Share Posted July 29, 2004 Hi , Where in Iowa? I'm in Iowa City. I'm an adult with RSS. I grew up in the Cleveland, OH area, so I can't help much with docs, though (although I met with a geneticist here at UIHC who confirmed the RSS dx, so she's seen at least one RSS case! HA!). Yup, the convention is always in Chicago -- only a 4 hr drive from here -- and it's tons of fun! Welcome! -Ana (27 years old, 4'8 " ) > Wow! There is so much to read and more RSS > information then I could have dreamed. I am going over to the Magic > Foundation to join after I post this. Looking forward to having a > pamphlet I can give my daughter's preschool teacher to explain RSS > better then I could. I have much to learn about this. I usually > tell people she is perfectly healthy, just going to be little. > > About the convention, is it always in Chicago? I am in north Iowa. > > > mom of Skylee (RSS 3yrs old) > plus her three siblings Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2004 Report Share Posted July 29, 2004 Hi Ana I am just north of Algona. So far the Mayo Clinic wants to keep seeing Skye every six months. (She has had about every test ever dreamed of that wasn't too invasive except lots of bloodwork). Last time we finally got to see a geneticist, she gave the actual RSS diagnosis (finally). The ped endo-something or other, Dr. Lteif was great. I am not convinced we need to go back for more. I still need to do more searching on the growth hormone. If Skye would make 4' 8 " on her own that would be great! > Hi , > > Where in Iowa? I'm in Iowa City. I'm an adult with RSS. I grew up > in the Cleveland, OH area, so I can't help much with docs, though > (although I met with a geneticist here at UIHC who confirmed the RSS > dx, so she's seen at least one RSS case! HA!). > > Yup, the convention is always in Chicago -- only a 4 hr drive from > here -- and it's tons of fun! > > Welcome! > -Ana > (27 years old, 4'8 " ) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 Hi , At 4'8 " , I'm just barely on the bottom of what people seem to consider " really small " , without automatically thinking that there's something " wrong " with me... until they see my family. My dad is 5'10 " , mom is 5'6 " and my " little " sister is 5'7 " . I'm sure those genetics helped me get to 4'8. I think Salem (the MAGIC RSS coordinator) has said that the average adult height for RSS women WITHOUT treatment is around 4'7 " . I'm very happy with myself at this point, and can find good things about being short too. That's the most important thing you can teach Skye -- confidence in herself, regardless of her height (or any other part of her body, for that matter)... That being said, a couple more inches would make a lot of things (clothes and grocery shopping, driving, banking, etc) a whole lot easier. And other parents on here can tell you more about the other benefits of GH (eg., increased muscle tone). Skye's still young, so you've got time to make the decision!! Good luck!! Hope to meet you (and Skye!) at the convention next year! -Ana (27 years old, 4'8 " ) > Hi Ana > I am just north of Algona. So far the Mayo Clinic wants to keep > seeing Skye every six months. (She has had about every test ever > dreamed of that wasn't too invasive except lots of bloodwork). Last > time we finally got to see a geneticist, she gave the actual RSS > diagnosis (finally). The ped endo-something or other, Dr. Lteif was > great. I am not convinced we need to go back for more. I still need > to do more searching on the growth hormone. If Skye would make 4' 8 " > on her own that would be great! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2004 Report Share Posted November 21, 2004 I keep meaning to reply those who welcomed me through this group and those who emailed me. But since there were quite a few and my time is so limited(like everyone else) I figured that I'd send a blanket " THANKS! " to everyone. I know it's not as personal but I know I'll never reply to all of them separately. This group has made me feel very welcome:) I now need to start getting ready for the Monday morning madness. Blessings, Quote Link to comment Share on other sites More sharing options...
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