Guest guest Posted December 19, 1999 Report Share Posted December 19, 1999 Hello and welcome to the list! I don't know the " numbers " answer to your question, but I do know other adults with RSS. A young woman on this list has started a new listserve just recently called RSS-People. You can access her listserve just as you accessed this one (RSS-Peopleonelist). Her listserve is for people who have RSS, adults and children alike. I hope you will join her listserve as well as continue to join our discussions of RSS! We are always seeking answers and experiences from those who have " gone before us " . Again, welcome! Dennise Mom to Ross, age 5 1/2 with RSS >From: jodiefriot@... > >Hello Everyone, > >I am 24 years old and was diagnosed with RSS at birth. I have been searching >the internet for information and stumbled onto this site this evening. To this >day, I don't even know how many people have been diagnosed with RSS or if there >are any other adults out there besides myself who have this. Does anyone know? >I have been told that there are less than 1,000 cases. Any general info. would >be greatly appreciated. Thanks. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 1999 Report Share Posted December 19, 1999 Welcome. I think I read somewhere that RSS occurs in every 50,000 to 100,000 births. Do you belong to The MAGIC Foundation? In their last newsletter there was a letter from a 17 year old with RSS. www.magicfoundation.org I think if you inquire, they'll send it to you. You've probably already found this in your searching but another good site is: www.rarediseases.org if you want to read medical abstracts. The new RSS-People onelist (someone else mentioned) might be great for you too. I'm just a few years older than you (28) and my daughter has RSS. She's 14 mos old. She hasn't officially been diagnosed yet-I think she has it and my ped is very supportive but so far the geneticist is clueless. I'm seeing a new endo in Jan and will probably see a new geneticist shortly after that. Its frustrating that the doctors aren't really up on RSS. Anyway, Abby is a happy, healthy little angel-13 lbs 14 oz and 25 3/4 in tall. Kathleen General Questions >From: jodiefriot@... > >Hello Everyone, > >I am 24 years old and was diagnosed with RSS at birth. I have been searching >the internet for information and stumbled onto this site this evening. To this >day, I don't even know how many people have been diagnosed with RSS or if there >are any other adults out there besides myself who have this. Does anyone know? >I have been told that there are less than 1,000 cases. Any general info. would >be greatly appreciated. Thanks. > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 1999 Report Share Posted December 20, 1999 Jodie, I hope that by getting in touch with RSS-People you will find other adults with RSS. I happen to know of several: There are two men in FL, that would both be in their 20's, a 30 year old woman in CT, a woman in PA, a young adult male in Canada-- he would be about 20 now. My brother also believes that he has a professor in CA that has RSS. He is coming out to visit us tomorrow, so I will find out more details from him regarding this gentleman. All of these people or their parents are/were members of the MAGIC foundation. I know that our Division Director is trying to get a database started of RSS adults who contact her. You may be able to find out more details regarding this by contacting the MAGIC office at 1 800 3MAGIC 3. Good Luck, ___________________________________________________________________ Why pay more to get Web access? Try Juno for FREE -- then it's just $9.95/month if you act NOW! Get your free software today: http://dl.www.juno.com/dynoget/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 1999 Report Share Posted December 20, 1999 Hi Jodi, Welcome to this list. As some one has already mentioned there is another listserver fro people with RSS. It is at http://www.onelist.com It was set up by in England. She has RSS also. I hope you will at least monitor this list because from time to time us parents of RSS children we might have some questions for you. Such as: Can you give us some details about you (age, height, weight, residence (city, state country), occupation) etc. No need to answer if you don't want to. How is your appetite ? What is your diet like ? Do you know if your RSS was considered severe, mild etc? How did you or your parents find out you had RSS? Any info you can give us will be greatly appreciated. Ken M father to 32 months, 22 pounds, and 32 " tall. General Questions From: jodiefriot@... Hello Everyone, I am 24 years old and was diagnosed with RSS at birth. I have been searching the internet for information and stumbled onto this site this evening. To this day, I don't even know how many people have been diagnosed with RSS or if there are any other adults out there besides myself who have this. Does anyone know? I have been told that there are less than 1,000 cases. Any general info. would be greatly appreciated. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 1999 Report Share Posted December 20, 1999 Hi guys, Here is some info. on me: I am 24 years old, am 4'9 " and weigh 65 lbs. I am originally from Vermont but now live in Boston, MA and work in Finance. I was diagnosed with RSS soon after my birth after my primary care doctor had discussions with a geneticist here in Boston about my symptoms. I don't know if my case would be considered mild or severe. I have limb asymmetry (my left side is a little longer than my right), scoliosis, clinodactly, etc... But, I have come across something which is one of the reasons why I have been searching for other people who have RSS. Earlier this year, while on vacation, I became tired and winded quickly. I went to the doctor immediately and after a battery of tests, it has been determined that I have some type of pulmonary ailment. The reason for all of this is that my chest wall is very small and and my heart and lungs are sort of squeezed in all together. I was wondering if anyone else had this trouble or not. Any insight on this matter would be great. Oh, Pat, I absolutely remember you and your letters! Sorry we never got together in Vermont. It's nice to hear from you again... Thanks everyone! Jodie --- Merrithew wrote: > Hi Jodi, > > Welcome to this list. As some one has already > mentioned there is another > listserver fro people with RSS. It is at > http://www.onelist.com It was set > up by in England. She has RSS also. > > I hope you will at least monitor this list because > from time to time us > parents of RSS children we might have some questions > for you. > > Such as: > > Can you give us some details about you (age, height, > weight, residence > (city, state country), occupation) etc. No need to > answer if you don't want > to. > > How is your appetite ? What is your diet like ? Do > you know if your RSS was > considered severe, mild etc? > > How did you or your parents find out you had RSS? > > Any info you can give us will be greatly > appreciated. > > Ken M > father to 32 months, 22 pounds, and 32 " tall. > > > General Questions > > > From: jodiefriot@... > > Hello Everyone, > > I am 24 years old and was diagnosed with RSS at > birth. I have been > searching > the internet for information and stumbled onto this > site this evening. To > this > day, I don't even know how many people have been > diagnosed with RSS or if > there > are any other adults out there besides myself who > have this. Does anyone > know? > I have been told that there are less than 1,000 > cases. Any general info. > would > be greatly appreciated. Thanks. > > <HR> <html> > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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