Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 That is interesting! I found a website not too long back about mosaicism in general, and I believe it said something similar... about how many miscarriages are usually some kind of chromosomal anomaly that can't sustain life, but mosaicisms can, because of the two cell lines, etc etc... it made sense to me! ~~ANGEL~~ Mom to: , 11, Mosaic Down Syndrome/Hirschsprung's Disease Lance 16, Tyler 12, 9, Jaeda 8 and Shayne 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 Wow!!! So DS people ACTUALLY have MDS....Hmmm, interesting that many of us with MDS have been snubbed for not being Downs enough. Maybe we need to educate that they show be thankful for MDS!!! Irene mom to Nat 10 MDS, Luke 8, Emilia 5, Lillilan 3, and Isaac 10 mo and Membership coordinator Green wrote: Hi everyone, Last month I met with a geneticist and in her opinion 60% of all people with ds have mds even though they have never been diagnosed. She said they have to be because... they would never be alive and functioning so well in our society. At birth karyotypes are done with 20 colonies counted and they should be 50 colonies counted. The problem is also as soon as trisomy 21 is found they usually stop there and say trisomy 21 ds thats it... I found this to be very interesting. _________________________________________________________________ Express yourself instantly with MSN Messenger! Download today - it's FREE! http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/ Become a member of IMDSA today at http://www.imdsa.com ************************************************* Learn more about MDS http://www.mosaicdownsyndrome.com ************************************************* Contact IMDSA Today at: IMDSA~PO Box 1052~lin,TX~77856~USA~1- ************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 , This is an interesting point of view. Although, I wonder if your geneticist thinks that most people with Ds are non-functioning? Since there are so many different degrees of delays with a person with Ds I can see her point that some people could have MDS. But, then again, they could just be functioning at a higher level. I think the outcome of the persons capabilites widely depends on how the child is raised (disabled vs non-disabled).I have always thought that there was a larger percent and like your geneticist, I agree that when they look at those 20 cells, they are satisfied with the trisomy 21. Kristy Green wrote: Hi everyone, Last month I met with a geneticist and in her opinion 60% of all people with ds have mds even though they have never been diagnosed. She said they have to be because... they would never be alive and functioning so well in our society. At birth karyotypes are done with 20 colonies counted and they should be 50 colonies counted. The problem is also as soon as trisomy 21 is found they usually stop there and say trisomy 21 ds thats it... I found this to be very interesting. _________________________________________________________________ Express yourself instantly with MSN Messenger! Download today - it's FREE! http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/ Become a member of IMDSA today at http://www.imdsa.com ************************************************* Learn more about MDS http://www.mosaicdownsyndrome.com ************************************************* Contact IMDSA Today at: IMDSA~PO Box 1052~lin,TX~77856~USA~1- ************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 Kriisty, She doesn't think that most people with Ds are non functioning. The reason why she became a geneticist is because she has a cousin who has Ds and she is in her 50's, and is doing extremely well because of her family growing up. She also thinks that there are people with MDs who show know physical signs, and have some sort of disability but were never diagnosed. The genetic counselor I met became counselor because her uncle has Ds. And her grandparents opened the first school in up state NY near stown for children with Ds when they were not allowed in public or private schools. They also opened up the first living independent assistance house too. I also gave them imdsa web. These two were great! I wonder if it's because they are women? > >Reply-To: MosaicDS >To: MosaicDS >Subject: Re: geneticists opinion >Date: Wed, 10 Nov 2004 13:49:11 -0800 (PST) > >, >This is an interesting point of view. Although, I wonder if your geneticist >thinks that most people with Ds are non-functioning? Since there are so >many different degrees of delays with a person with Ds I can see her point >that some people could have MDS. But, then again, they could just be >functioning at a higher level. I think the outcome of the persons >capabilites widely depends on how the child is raised (disabled vs >non-disabled).I have always thought that there was a larger percent and >like your geneticist, I agree that when they look at those 20 cells, they >are satisfied with the trisomy 21. >Kristy > > Green wrote: >Hi everyone, > >Last month I met with a geneticist and in her opinion 60% of all people >with >ds have mds even though they have never been diagnosed. She said they have >to be because... they would never be alive and functioning so well in our >society. At birth karyotypes are done with 20 colonies counted and they >should be 50 colonies counted. The problem is also as soon as trisomy 21 >is >found they usually stop there and say trisomy 21 ds thats it... > >I found this to be very interesting. > > > > >_________________________________________________________________ >Express yourself instantly with MSN Messenger! Download today - it's FREE! >http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/ > > > >Become a member of IMDSA today at http://www.imdsa.com >************************************************* >Learn more about MDS http://www.mosaicdownsyndrome.com >************************************************* >Contact IMDSA Today at: >IMDSA~PO Box 1052~lin,TX~77856~USA~1- >************************************************* > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 , It sounds like you were blessed with some really fantastic people! I would love to get to know them! Kristy Green wrote: Kriisty, She doesn't think that most people with Ds are non functioning. The reason why she became a geneticist is because she has a cousin who has Ds and she is in her 50's, and is doing extremely well because of her family growing up. She also thinks that there are people with MDs who show know physical signs, and have some sort of disability but were never diagnosed. The genetic counselor I met became counselor because her uncle has Ds. And her grandparents opened the first school in up state NY near stown for children with Ds when they were not allowed in public or private schools. They also opened up the first living independent assistance house too. I also gave them imdsa web. These two were great! I wonder if it's because they are women? > >Reply-To: MosaicDS >To: MosaicDS >Subject: Re: geneticists opinion >Date: Wed, 10 Nov 2004 13:49:11 -0800 (PST) > >, >This is an interesting point of view. Although, I wonder if your geneticist >thinks that most people with Ds are non-functioning? Since there are so >many different degrees of delays with a person with Ds I can see her point >that some people could have MDS. But, then again, they could just be >functioning at a higher level. I think the outcome of the persons >capabilites widely depends on how the child is raised (disabled vs >non-disabled).I have always thought that there was a larger percent and >like your geneticist, I agree that when they look at those 20 cells, they >are satisfied with the trisomy 21. >Kristy > > Green wrote: >Hi everyone, > >Last month I met with a geneticist and in her opinion 60% of all people >with >ds have mds even though they have never been diagnosed. She said they have >to be because... they would never be alive and functioning so well in our >society. At birth karyotypes are done with 20 colonies counted and they >should be 50 colonies counted. The problem is also as soon as trisomy 21 >is >found they usually stop there and say trisomy 21 ds thats it... > >I found this to be very interesting. > > > > >_________________________________________________________________ >Express yourself instantly with MSN Messenger! Download today - it's FREE! >http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/ > > > >Become a member of IMDSA today at http://www.imdsa.com >************************************************* >Learn more about MDS http://www.mosaicdownsyndrome.com >************************************************* >Contact IMDSA Today at: >IMDSA~PO Box 1052~lin,TX~77856~USA~1- >************************************************* > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 Hi Kristy, If you are interested both of these wonderful ladies are affiliated with Westchester County Medical Center in Thornwood, NY. > >Reply-To: MosaicDS >To: MosaicDS >Subject: Re: geneticists opinion >Date: Wed, 10 Nov 2004 20:49:59 -0800 (PST) > >, >It sounds like you were blessed with some really fantastic people! I would >love to get to know them! >Kristy > > Green wrote: >Kriisty, > >She doesn't think that most people with Ds are non functioning. The reason >why she became a geneticist is because she has a cousin who has Ds and she >is in her 50's, and is doing extremely well because of her family growing >up. She also thinks that there are people with MDs who show know physical >signs, and have some sort of disability but were never diagnosed. > >The genetic counselor I met became counselor because her uncle has Ds. And >her grandparents opened the first school in up state NY near stown >for >children with Ds when they were not allowed in public or private schools. >They also opened up the first living independent assistance house too. > >I also gave them imdsa web. These two were great! I wonder if it's >because >they are women? > > > > > > >Reply-To: MosaicDS > >To: MosaicDS > >Subject: Re: geneticists opinion > >Date: Wed, 10 Nov 2004 13:49:11 -0800 (PST) > > > >, > >This is an interesting point of view. Although, I wonder if your >geneticist > >thinks that most people with Ds are non-functioning? Since there are so > >many different degrees of delays with a person with Ds I can see her >point > >that some people could have MDS. But, then again, they could just be > >functioning at a higher level. I think the outcome of the persons > >capabilites widely depends on how the child is raised (disabled vs > >non-disabled).I have always thought that there was a larger percent and > >like your geneticist, I agree that when they look at those 20 cells, they > >are satisfied with the trisomy 21. > >Kristy > > > > Green wrote: > >Hi everyone, > > > >Last month I met with a geneticist and in her opinion 60% of all people > >with > >ds have mds even though they have never been diagnosed. She said they >have > >to be because... they would never be alive and functioning so well in our > >society. At birth karyotypes are done with 20 colonies counted and they > >should be 50 colonies counted. The problem is also as soon as trisomy 21 > >is > >found they usually stop there and say trisomy 21 ds thats it... > > > >I found this to be very interesting. > > > > > > > > > >_________________________________________________________________ > >Express yourself instantly with MSN Messenger! Download today - it's >FREE! > >http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/ > > > > > > > >Become a member of IMDSA today at http://www.imdsa.com > >************************************************* > >Learn more about MDS http://www.mosaicdownsyndrome.com > >************************************************* > >Contact IMDSA Today at: > >IMDSA~PO Box 1052~lin,TX~77856~USA~1- > >************************************************* > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 , I would love to invite them to attend our conference! Could you private email me their names and addresses? Thanks, Kristy Green wrote: Hi Kristy, If you are interested both of these wonderful ladies are affiliated with Westchester County Medical Center in Thornwood, NY. > >Reply-To: MosaicDS >To: MosaicDS >Subject: Re: geneticists opinion >Date: Wed, 10 Nov 2004 20:49:59 -0800 (PST) > >, >It sounds like you were blessed with some really fantastic people! I would >love to get to know them! >Kristy > > Green wrote: >Kriisty, > >She doesn't think that most people with Ds are non functioning. The reason >why she became a geneticist is because she has a cousin who has Ds and she >is in her 50's, and is doing extremely well because of her family growing >up. She also thinks that there are people with MDs who show know physical >signs, and have some sort of disability but were never diagnosed. > >The genetic counselor I met became counselor because her uncle has Ds. And >her grandparents opened the first school in up state NY near stown >for >children with Ds when they were not allowed in public or private schools. >They also opened up the first living independent assistance house too. > >I also gave them imdsa web. These two were great! I wonder if it's >because >they are women? > > > > > > >Reply-To: MosaicDS > >To: MosaicDS > >Subject: Re: geneticists opinion > >Date: Wed, 10 Nov 2004 13:49:11 -0800 (PST) > > > >, > >This is an interesting point of view. Although, I wonder if your >geneticist > >thinks that most people with Ds are non-functioning? Since there are so > >many different degrees of delays with a person with Ds I can see her >point > >that some people could have MDS. But, then again, they could just be > >functioning at a higher level. I think the outcome of the persons > >capabilites widely depends on how the child is raised (disabled vs > >non-disabled).I have always thought that there was a larger percent and > >like your geneticist, I agree that when they look at those 20 cells, they > >are satisfied with the trisomy 21. > >Kristy > > > > Green wrote: > >Hi everyone, > > > >Last month I met with a geneticist and in her opinion 60% of all people > >with > >ds have mds even though they have never been diagnosed. She said they >have > >to be because... they would never be alive and functioning so well in our > >society. At birth karyotypes are done with 20 colonies counted and they > >should be 50 colonies counted. The problem is also as soon as trisomy 21 > >is > >found they usually stop there and say trisomy 21 ds thats it... > > > >I found this to be very interesting. > > > > > > > > > >_________________________________________________________________ > >Express yourself instantly with MSN Messenger! Download today - it's >FREE! > >http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/ > > > > > > > >Become a member of IMDSA today at http://www.imdsa.com > >************************************************* > >Learn more about MDS http://www.mosaicdownsyndrome.com > >************************************************* > >Contact IMDSA Today at: > >IMDSA~PO Box 1052~lin,TX~77856~USA~1- > >************************************************* > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 Hi Kristy, I'll e-mail you the names and addresses tomorrow morning It's getting late. Thanks, > >Reply-To: MosaicDS >To: MosaicDS >Subject: Re: geneticists opinion >Date: Mon, 15 Nov 2004 07:04:36 -0800 (PST) > >, >I would love to invite them to attend our conference! Could you private >email me their names and addresses? >Thanks, >Kristy > > Green wrote: >Hi Kristy, > >If you are interested both of these wonderful ladies are affiliated with >Westchester County Medical Center in Thornwood, NY. > > > > > > > >Reply-To: MosaicDS > >To: MosaicDS > >Subject: Re: geneticists opinion > >Date: Wed, 10 Nov 2004 20:49:59 -0800 (PST) > > > >, > >It sounds like you were blessed with some really fantastic people! I >would > >love to get to know them! > >Kristy > > > > Green wrote: > >Kriisty, > > > >She doesn't think that most people with Ds are non functioning. The >reason > >why she became a geneticist is because she has a cousin who has Ds and >she > >is in her 50's, and is doing extremely well because of her family >growing > >up. She also thinks that there are people with MDs who show know >physical > >signs, and have some sort of disability but were never diagnosed. > > > >The genetic counselor I met became counselor because her uncle has Ds. >And > >her grandparents opened the first school in up state NY near stown > >for > >children with Ds when they were not allowed in public or private schools. > >They also opened up the first living independent assistance house too. > > > >I also gave them imdsa web. These two were great! I wonder if it's > >because > >they are women? > > > > > > > > > > > >Reply-To: MosaicDS > > >To: MosaicDS > > >Subject: Re: geneticists opinion > > >Date: Wed, 10 Nov 2004 13:49:11 -0800 (PST) > > > > > >, > > >This is an interesting point of view. Although, I wonder if your > >geneticist > > >thinks that most people with Ds are non-functioning? Since there are so > > >many different degrees of delays with a person with Ds I can see her > >point > > >that some people could have MDS. But, then again, they could just be > > >functioning at a higher level. I think the outcome of the persons > > >capabilites widely depends on how the child is raised (disabled vs > > >non-disabled).I have always thought that there was a larger percent and > > >like your geneticist, I agree that when they look at those 20 cells, >they > > >are satisfied with the trisomy 21. > > >Kristy > > > > > > Green wrote: > > >Hi everyone, > > > > > >Last month I met with a geneticist and in her opinion 60% of all people > > >with > > >ds have mds even though they have never been diagnosed. She said they > >have > > >to be because... they would never be alive and functioning so well in >our > > >society. At birth karyotypes are done with 20 colonies counted and >they > > >should be 50 colonies counted. The problem is also as soon as trisomy >21 > > >is > > >found they usually stop there and say trisomy 21 ds thats it... > > > > > >I found this to be very interesting. > > > > > > > > > > > > > > >_________________________________________________________________ > > >Express yourself instantly with MSN Messenger! Download today - it's > >FREE! > > >http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/ > > > > > > > > > > > >Become a member of IMDSA today at http://www.imdsa.com > > >************************************************* > > >Learn more about MDS http://www.mosaicdownsyndrome.com > > >************************************************* > > >Contact IMDSA Today at: > > >IMDSA~PO Box 1052~lin,TX~77856~USA~1- > > >************************************************* > > > Quote Link to comment Share on other sites More sharing options...
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