Guest guest Posted November 30, 2006 Report Share Posted November 30, 2006 Hi Everyone I wanted to be sure to clarify some things concerning 's comments on Familial MDS just so you all will not be confused or worried that this is something that happens with everyone. and her doctor are exploring the possibilities that she and her family could be carriers of a gene that made her son have MDS. The doctor did confirm that her son has MDS when he had previously been diagnosed as having Trisomy 21 Down syndrome. This is not an uncommon occurrence. Many individuals who are diagnosed with Down syndrome later have more extensive tests and discover that they have MDS. The reason for the large percent of misdiagnosis is because of the small number of cells that are typically tested. and I have enjoyed many conversations on the phone. She says that her family has physical characteristics that people with Down syndrome can have. This is why she believes she is a carrier of this gene. Please know that if this is found to be true, then would be the first of its kind. Typically, MDS happens when the cells divide and have nothing to do with inheritance. And, it is very typical for the average person to have a low amount of trisomy 21 cells in their body. (I have 0.1 in my blood and 0.4 in my skin!) According to our main MDS research study at Virginia Commonwealth University/Medical College of Virginia " All people have a small amount of the extra chromosome " So, we are all anxiously awaiting the results from 's doctor to see what is next. I just wanted to be sure that everyone understood this situation, because as a new parent especially, this can become a very confusing topic of discussion. Thanks for bringing in such a lively discussion to our board! I have thoroughly enjoyed it! Kristy TenEyck wrote: You are understanding correctly. Apparently my sibs, my nieces amd nephews and my maternal lineage does as well. We are waiting on the chromosomal results for all. (My son had his back first.) Apparently, my 20 year old displays a majority of the symptoms. We think my husband may have it also. The geneticist says it is familial and inherited, but we are currently looking into blood only. http://discoverspaces.live.com?source=hmtag1 & loc=us Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2006 Report Share Posted November 30, 2006 Thanks for the clarification Kristy. :0) We are very excited! BTW, I did not know this about your percentages in your blood and skin. How did you find this out? (That kinda shows that " genes are inherited " .) Does your husband know what his percentages are? To: MosaicDS@...: imdsapresident@...: Thu, 30 Nov 2006 10:12:52 -0800Subject: Clarifying Familial MDS Hi EveryoneI wanted to be sure to clarify some things concerning 's comments on Familial MDS just so you all will not be confused or worried that this is something that happens with everyone. and her doctor are exploring the possibilities that she and her family could be carriers of a gene that made her son have MDS. The doctor did confirm that her son has MDS when he had previously been diagnosed as having Trisomy 21 Down syndrome. This is not an uncommon occurrence. Many individuals who are diagnosed with Down syndrome later have more extensive tests and discover that they have MDS. The reason for the large percent of misdiagnosis is because of the small number of cells that are typically tested. and I have enjoyed many conversations on the phone. She says that her family has physical characteristics that people with Down syndrome can have. This is why she believes she is a carrier of this gene.Please know that if this is found to be true, then would be the first of its kind. Typically, MDS happens when the cells divide and have nothing to do with inheritance. And, it is very typical for the average person to have a low amount of trisomy 21 cells in their body. (I have 0.1 in my blood and 0.4 in my skin!) According to our main MDS research study at Virginia Commonwealth University/Medical College of Virginia " All people have a small amount of the extra chromosome " So, we are all anxiously awaiting the results from 's doctor to see what is next.I just wanted to be sure that everyone understood this situation, because as a new parent especially, this can become a very confusing topic of discussion. Thanks for bringing in such a lively discussion to our board! I have thoroughly enjoyed it!Kristy TenEyck wrote:You are understanding correctly. Apparently my sibs, my nieces amd nephews and my maternal lineage does as well. We are waiting on the chromosomal results for all. (My son had his back first.) Apparently, my 20 year old displays a majority of the symptoms. We think my husband may have it also. The geneticist says it is familial and inherited, but we are currently looking into blood only.http://discoverspaces.live.com?source=hmtag1 & loc=us[Non-text portions of this message have been removed]---------------------------------Everyone is raving about the all-new Yahoo! Mail beta.[Non-text portions of this message have been removed] _________________________________________________________________ Express yourself with gadgets on Windows Live Spaces http://discoverspaces.live.com?source=hmtag1 & loc=us Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2006 Report Share Posted November 30, 2006 Also, I forgot to say that I will let you know when I get that information on studies collected on inherited trisomies. (I just E-mailed the geneticist again.) To: MosaicDS@...: imdsapresident@...: Thu, 30 Nov 2006 10:12:52 -0800Subject: Clarifying Familial MDS Hi EveryoneI wanted to be sure to clarify some things concerning 's comments on Familial MDS just so you all will not be confused or worried that this is something that happens with everyone. and her doctor are exploring the possibilities that she and her family could be carriers of a gene that made her son have MDS. The doctor did confirm that her son has MDS when he had previously been diagnosed as having Trisomy 21 Down syndrome. This is not an uncommon occurrence. Many individuals who are diagnosed with Down syndrome later have more extensive tests and discover that they have MDS. The reason for the large percent of misdiagnosis is because of the small number of cells that are typically tested. and I have enjoyed many conversations on the phone. She says that her family has physical characteristics that people with Down syndrome can have. This is why she believes she is a carrier of this gene.Please know that if this is found to be true, then would be the first of its kind. Typically, MDS happens when the cells divide and have nothing to do with inheritance. And, it is very typical for the average person to have a low amount of trisomy 21 cells in their body. (I have 0.1 in my blood and 0.4 in my skin!) According to our main MDS research study at Virginia Commonwealth University/Medical College of Virginia " All people have a small amount of the extra chromosome " So, we are all anxiously awaiting the results from 's doctor to see what is next.I just wanted to be sure that everyone understood this situation, because as a new parent especially, this can become a very confusing topic of discussion. Thanks for bringing in such a lively discussion to our board! I have thoroughly enjoyed it!Kristy TenEyck wrote:You are understanding correctly. Apparently my sibs, my nieces amd nephews and my maternal lineage does as well. We are waiting on the chromosomal results for all. (My son had his back first.) Apparently, my 20 year old displays a majority of the symptoms. We think my husband may have it also. The geneticist says it is familial and inherited, but we are currently looking into blood only.http://discoverspaces.live.com?source=hmtag1 & loc=us[Non-text portions of this message have been removed]---------------------------------Everyone is raving about the all-new Yahoo! Mail beta.[Non-text portions of this message have been removed] _________________________________________________________________ Search from any Web page with powerful protection. Get the FREE Windows Live Toolbar Today! http://get.live.com/toolbar/overview Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2006 Report Share Posted November 30, 2006 We just now found out about the percentages. In 2004 when we had our first MDS Research and Awareness conference in Virginia, we participated in the MDS research at VCU. Dr. -Cook (head of the research) is just now wrapping up this extensive research study and has sent me (and anyone else who was involved in the research) My husband did not participate in the research. But, as I said before the research paper said that ALL people have a low percentage of trisomy 21. I plan to talk with Dr. J-C about this more. Kristy TenEyck wrote: Thanks for the clarification Kristy. :0) We are very excited! BTW, I did not know this about your percentages in your blood and skin. How did you find this out? (That kinda shows that " genes are inherited " .) Does your husband know what his percentages are? To: MosaicDS@...: imdsapresident@...: Thu, 30 Nov 2006 10:12:52 -0800Subject: Clarifying Familial MDS Hi EveryoneI wanted to be sure to clarify some things concerning 's comments on Familial MDS just so you all will not be confused or worried that this is something that happens with everyone. and her doctor are exploring the possibilities that she and her family could be carriers of a gene that made her son have MDS. The doctor did confirm that her son has MDS when he had previously been diagnosed as having Trisomy 21 Down syndrome. This is not an uncommon occurrence. Many individuals who are diagnosed with Down syndrome later have more extensive tests and discover that they have MDS. The reason for the large percent of misdiagnosis is because of the small number of cells that are typically tested. and I have enjoyed many conversations on the phone. She says that her family has physical characteristics that people with Down syndrome can have. This is why she believes she is a carrier of this gene.Please know that if this is found to be true, then would be the first of its kind. Typically, MDS happens when the cells divide and have nothing to do with inheritance. And, it is very typical for the average person to have a low amount of trisomy 21 cells in their body. (I have 0.1 in my blood and 0.4 in my skin!) According to our main MDS research study at Virginia Commonwealth University/Medical College of Virginia " All people have a small amount of the extra chromosome " So, we are all anxiously awaiting the results from 's doctor to see what is next.I just wanted to be sure that everyone understood this situation, because as a new parent especially, this can become a very confusing topic of discussion. Thanks for bringing in such a lively discussion to our board! I have thoroughly enjoyed it!Kristy TenEyck wrote:You are understanding correctly. Apparently my sibs, my nieces amd nephews and my maternal lineage does as well. We are waiting on the chromosomal results for all. (My son had his back first.) Apparently, my 20 year old displays a majority of the symptoms. We think my husband may have it also. The geneticist says it is familial and inherited, but we are currently looking into blood only.http://discoverspaces.live.com?source=hmtag1 & loc=us[Non-text portions of this message have been removed]---------------------------------Everyone is raving about the all-new Yahoo! Mail beta.[Non-text portions of this message have been removed] __________________________________________________________ Express yourself with gadgets on Windows Live Spaces http://discoverspaces.live.com?source=hmtag1 & loc=us Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2006 Report Share Posted November 30, 2006 Yes, I am aware that all people have some sort of trisomic cells in their body somewhere. Also, I am aware (as you know) that many more of us are Mosaic than known due to lack of testing everyone at birth. I just wondered if you did a test to rule out MDS and this is what they found? To: MosaicDS@...: imdsapresident@...: Thu, 30 Nov 2006 11:57:09 -0800Subject: RE: Clarifying Familial MDS We just now found out about the percentages. In 2004 when we had our first MDS Research and Awareness conference in Virginia, we participated in the MDS research at VCU. Dr. -Cook (head of the research) is just now wrapping up this extensive research study and has sent me (and anyone else who was involved in the research) My husband did not participate in the research. But, as I said before the research paper said that ALL people have a low percentage of trisomy 21. I plan to talk with Dr. J-C about this more.Kristy TenEyck wrote:Thanks for the clarification Kristy. :0) We are very excited!BTW, I did not know this about your percentages in your blood and skin. How did you find this out?(That kinda shows that " genes are inherited " .) Does your husband know what his percentages are?To: MosaicDS@...: imdsapresident@...: Thu, 30 Nov 2006 10:12:52 -0800Subject: Clarifying Familial MDSHi EveryoneI wanted to be sure to clarify some things concerning 's comments on Familial MDS just so you all will not be confused or worried that this is something that happens with everyone. and her doctor are exploring the possibilities that she and her family could be carriers of a gene that made her son have MDS. The doctor did confirm that her son has MDS when he had previously been diagnosed as having Trisomy 21 Down syndrome. This is not an uncommon occurrence. Many individuals who are diagnosed with Down syndrome later have more extensive tests and discover that they have MDS. The reason for the large percent of misdiagnosis is because of the small number of cells that are typically tested. and I have enjoyed many conversations on the phone. She says that her family has physical characteristics that people with Down syndrome can have. This is why she believes she is a carrier of this gene.Please know that if this is found to be true, then wouldbe the first of its kind. Typically, MDS happens when the cells divide and have nothing to do with inheritance. And, it is very typical for the average person to have a low amount of trisomy 21 cells in their body. (I have 0.1 in my blood and 0.4 in my skin!) According to our main MDS research study at Virginia Commonwealth University/Medical College of Virginia " All people have a small amount of the extra chromosome " So, we are all anxiously awaiting the results from 's doctor to see what is next.I just wanted to be sure that everyone understood this situation, because as a new parent especially, this can become a very confusing topic of discussion. Thanks for bringing in such a lively discussion to our board! I have thoroughly enjoyed it!Kristy TenEyck wrote:You are understanding correctly. Apparently my sibs, my nieces amd nephews and my maternal lineage does as well. We are waiting on the chromosomal results for all. (My sonhad his back first.) Apparently, my 20 year old displays a majority of the symptoms. We think my husband may have it also. The geneticist says it is familial and inherited, but we are currently looking into blood only.http://discoverspaces.live.com?source=hmtag1 & loc=us[Non-text portions of this message have been removed]---------------------------------Everyone is raving about the all-new Yahoo! Mail beta.[Non-text portions of this message have been removed] __________________________________________________________Express yourself with gadgets on Windows Live Spaceshttp://discoverspaces.live.com?source=hmtag1 & loc=us[Non-text portions of this message have been removed]__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2006 Report Share Posted November 30, 2006 No, this was part of the standard research. They were comparing family cells to the affected individual. Kristy TenEyck wrote: Yes, I am aware that all people have some sort of trisomic cells in their body somewhere. Also, I am aware (as you know) that many more of us are Mosaic than known due to lack of testing everyone at birth. I just wondered if you did a test to rule out MDS and this is what they found? To: MosaicDS@...: imdsapresident@...: Thu, 30 Nov 2006 11:57:09 -0800Subject: RE: Clarifying Familial MDS We just now found out about the percentages. In 2004 when we had our first MDS Research and Awareness conference in Virginia, we participated in the MDS research at VCU. Dr. -Cook (head of the research) is just now wrapping up this extensive research study and has sent me (and anyone else who was involved in the research) My husband did not participate in the research. But, as I said before the research paper said that ALL people have a low percentage of trisomy 21. I plan to talk with Dr. J-C about this more.Kristy TenEyck wrote:Thanks for the clarification Kristy. :0) We are very excited!BTW, I did not know this about your percentages in your blood and skin. How did you find this out?(That kinda shows that " genes are inherited " .) Does your husband know what his percentages are?To: MosaicDS@...: imdsapresident@...: Thu, 30 Nov 2006 10:12:52 -0800Subject: Clarifying Familial MDSHi EveryoneI wanted to be sure to clarify some things concerning 's comments on Familial MDS just so you all will not be confused or worried that this is something that happens with everyone. and her doctor are exploring the possibilities that she and her family could be carriers of a gene that made her son have MDS. The doctor did confirm that her son has MDS when he had previously been diagnosed as having Trisomy 21 Down syndrome. This is not an uncommon occurrence. Many individuals who are diagnosed with Down syndrome later have more extensive tests and discover that they have MDS. The reason for the large percent of misdiagnosis is because of the small number of cells that are typically tested. and I have enjoyed many conversations on the phone. She says that her family has physical characteristics that people with Down syndrome can have. This is why she believes she is a carrier of this gene.Please know that if this is found to be true, then wouldbe the first of its kind. Typically, MDS happens when the cells divide and have nothing to do with inheritance. And, it is very typical for the average person to have a low amount of trisomy 21 cells in their body. (I have 0.1 in my blood and 0.4 in my skin!) According to our main MDS research study at Virginia Commonwealth University/Medical College of Virginia " All people have a small amount of the extra chromosome " So, we are all anxiously awaiting the results from 's doctor to see what is next.I just wanted to be sure that everyone understood this situation, because as a new parent especially, this can become a very confusing topic of discussion. Thanks for bringing in such a lively discussion to our board! I have thoroughly enjoyed it!Kristy TenEyck wrote:You are understanding correctly. Apparently my sibs, my nieces amd nephews and my maternal lineage does as well. We are waiting on the chromosomal results for all. (My sonhad his back first.) Apparently, my 20 year old displays a majority of the symptoms. We think my husband may have it also. The geneticist says it is familial and inherited, but we are currently looking into blood only.http://discoverspaces.live.com?source=hmtag1 & loc=us[Non-text portions of this message have been removed]---------------------------------Everyone is raving about the all-new Yahoo! Mail beta.[Non-text portions of this message have been removed] __________________________________________________________Express yourself with gadgets on Windows Live Spaceshttp://discoverspaces.live.com?source=hmtag1 & loc=us[Non-text portions of this message have been removed]__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2006 Report Share Posted November 30, 2006 I am confused, Kristy. Sorry. So, they actually took blood and skin samples? To: MosaicDS@...: imdsapresident@...: Thu, 30 Nov 2006 13:42:28 -0800Subject: RE: Clarifying Familial MDS No, this was part of the standard research. They were comparing family cells to the affected individual. Kristy TenEyck wrote:Yes, I am aware that all people have some sort of trisomic cells in their body somewhere. Also, I am aware (as you know) that many more of us are Mosaic than known due to lack of testing everyone at birth.I just wondered if you did a test to rule out MDS and this is what they found?To: MosaicDS@...: imdsapresident@...: Thu, 30 Nov 2006 11:57:09 -0800Subject: RE: Clarifying Familial MDSWe just now found out about the percentages. In 2004 when we had our first MDS Research and Awareness conference in Virginia, we participated in the MDS research at VCU. Dr. -Cook (head of the research) is just now wrapping up this extensive research study and has sent me (and anyone else who was involved in the research) My husband did not participate in the research. But, as I said before the research paper said that ALL people have a low percentage of trisomy 21. I plan to talk with Dr. J-C about this more.Kristy TenEyck wrote:Thanks for the clarification Kristy. :0) We are very excited!BTW, I did not know this about your percentages in your blood and skin. How did you find this out?(That kinda shows that " genes are inherited " .) Does your husband know what his percentages are?To: MosaicDS@...: imdsapresident@...: Thu, 30 Nov 2006 10:12:52 -0800Subject: Clarifying Familial MDSHi EveryoneI wanted tobe sure to clarify some things concerning 's comments on Familial MDS just so you all will not be confused or worried that this is something that happens with everyone. and her doctor are exploring the possibilities that she and her family could be carriers of a gene that made her son have MDS. The doctor did confirm that her son has MDS when he had previously been diagnosed as having Trisomy 21 Down syndrome. This is not an uncommon occurrence. Many individuals who are diagnosed with Down syndrome later have more extensive tests and discover that they have MDS. The reason for the large percent of misdiagnosis is because of the small number of cells that are typically tested. and I have enjoyed many conversations on the phone. She says that her family has physical characteristics that people with Down syndrome can have. This is why she believes she is a carrier of this gene.Please know that if this is found to be true, then wouldbe the first of itskind. Typically, MDS happens when the cells divide and have nothing to do with inheritance. And, it is very typical for the average person to have a low amount of trisomy 21 cells in their body. (I have 0.1 in my blood and 0.4 in my skin!) According to our main MDS research study at Virginia Commonwealth University/Medical College of Virginia " All people have a small amount of the extra chromosome " So, we are all anxiously awaiting the results from 's doctor to see what is next.I just wanted to be sure that everyone understood this situation, because as a new parent especially, this can become a very confusing topic of discussion. Thanks for bringing in such a lively discussion to our board! I have thoroughly enjoyed it!Kristy TenEyck wrote:You are understanding correctly. Apparently my sibs, my nieces amd nephews and my maternal lineage does as well. We are waiting on the chromosomal results for all. (My sonhad his back first.)Apparently, my 20 year old displays a majority of the symptoms. We think my husband may have it also. The geneticist says it is familial and inherited, but we are currently looking into blood only.http://discoverspaces.live.com?source=hmtag1 & loc=us[Non-text portions of this message have been removed]---------------------------------Everyone is raving about the all-new Yahoo! Mail beta.[Non-text portions of this message have been removed] __________________________________________________________Express yourself with gadgets on Windows Live Spaceshttp://discoverspaces.live.com?source=hmtag1 & loc=us[Non-text portions of this message have been removed]__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2006 Report Share Posted November 30, 2006 yes they took blood and skin samples TenEyck wrote: I am confused, Kristy. Sorry. So, they actually took blood and skin samples? To: MosaicDS@...: imdsapresident@...: Thu, 30 Nov 2006 13:42:28 -0800Subject: RE: Clarifying Familial MDS No, this was part of the standard research. They were comparing family cells to the affected individual. Kristy TenEyck wrote:Yes, I am aware that all people have some sort of trisomic cells in their body somewhere. Also, I am aware (as you know) that many more of us are Mosaic than known due to lack of testing everyone at birth.I just wondered if you did a test to rule out MDS and this is what they found?To: MosaicDS@...: imdsapresident@...: Thu, 30 Nov 2006 11:57:09 -0800Subject: RE: Clarifying Familial MDSWe just now found out about the percentages. In 2004 when we had our first MDS Research and Awareness conference in Virginia, we participated in the MDS research at VCU. Dr. -Cook (head of the research) is just now wrapping up this extensive research study and has sent me (and anyone else who was involved in the research) My husband did not participate in the research. But, as I said before the research paper said that ALL people have a low percentage of trisomy 21. I plan to talk with Dr. J-C about this more.Kristy TenEyck wrote:Thanks for the clarification Kristy. :0) We are very excited!BTW, I did not know this about your percentages in your blood and skin. How did you find this out?(That kinda shows that " genes are inherited " .) Does your husband know what his percentages are?To: MosaicDS@...: imdsapresident@...: Thu, 30 Nov 2006 10:12:52 -0800Subject: Clarifying Familial MDSHi EveryoneI wanted tobe sure to clarify some things concerning 's comments on Familial MDS just so you all will not be confused or worried that this is something that happens with everyone. and her doctor are exploring the possibilities that she and her family could be carriers of a gene that made her son have MDS. The doctor did confirm that her son has MDS when he had previously been diagnosed as having Trisomy 21 Down syndrome. This is not an uncommon occurrence. Many individuals who are diagnosed with Down syndrome later have more extensive tests and discover that they have MDS. The reason for the large percent of misdiagnosis is because of the small number of cells that are typically tested. and I have enjoyed many conversations on the phone. She says that her family has physical characteristics that people with Down syndrome can have. This is why she believes she is a carrier of this gene.Please know that if this is found to be true, then wouldbe the first of itskind. Typically, MDS happens when the cells divide and have nothing to do with inheritance. And, it is very typical for the average person to have a low amount of trisomy 21 cells in their body. (I have 0.1 in my blood and 0.4 in my skin!) According to our main MDS research study at Virginia Commonwealth University/Medical College of Virginia " All people have a small amount of the extra chromosome " So, we are all anxiously awaiting the results from 's doctor to see what is next.I just wanted to be sure that everyone understood this situation, because as a new parent especially, this can become a very confusing topic of discussion. Thanks for bringing in such a lively discussion to our board! I have thoroughly enjoyed it!Kristy TenEyck wrote:You are understanding correctly. Apparently my sibs, my nieces amd nephews and my maternal lineage does as well. We are waiting on the chromosomal results for all. (My sonhad his back first.)Apparently, my 20 year old displays a majority of the symptoms. We think my husband may have it also. The geneticist says it is familial and inherited, but we are currently looking into blood only.http://discoverspaces.live.com?source=hmtag1 & loc=us[Non-text portions of this message have been removed]---------------------------------Everyone is raving about the all-new Yahoo! Mail beta.[Non-text portions of this message have been removed] __________________________________________________________Express yourself with gadgets on Windows Live Spaceshttp://discoverspaces.live.com?source=hmtag1 & loc=us[Non-text portions of this message have been removed]__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2006 Report Share Posted November 30, 2006 Cool. Will they do that this time? Does it cost? To: MosaicDS@...: imdsapresident@...: Thu, 30 Nov 2006 14:58:34 -0800Subject: RE: Clarifying Familial MDS yes they took blood and skin samples TenEyck wrote: I am confused, Kristy. Sorry.So, they actually took blood and skin samples?To: MosaicDS@...: imdsapresident@...: Thu, 30 Nov 2006 13:42:28 -0800Subject: RE: Clarifying Familial MDSNo, this was part of the standard research. They were comparing family cells to the affected individual. Kristy TenEyck wrote:Yes, I am aware that all people have some sort of trisomic cells in their body somewhere. Also, I am aware (as you know) that many more of us are Mosaic than known due to lack of testing everyone at birth.I just wondered if you did a test to rule out MDS and this is what they found?To: MosaicDS@...: imdsapresident@...: Thu, 30 Nov 2006 11:57:09 -0800Subject: RE: Clarifying Familial MDSWe just now found out about the percentages. In 2004 when we had our first MDS Research and Awareness conference in Virginia, we participated in the MDS research at VCU. Dr. -Cook (head of the research) is just now wrapping up this extensive research study and has sent me (and anyone else who was involved in the research) My husband did not participate in the research. But, as I said before theresearch paper said that ALL people have a low percentage of trisomy 21. I plan to talk with Dr. J-C about this more.Kristy TenEyck wrote:Thanks for the clarification Kristy. :0) We are very excited!BTW, I did not know this about your percentages in your blood and skin. How did you find this out?(That kinda shows that " genes are inherited " .) Does your husband know what his percentages are?To: MosaicDS@...: imdsapresident@...: Thu, 30 Nov 2006 10:12:52 -0800Subject: Clarifying Familial MDSHi EveryoneI wanted tobe sure to clarify some things concerning 's comments on Familial MDS just so you all will not be confused or worried that this is something that happens with everyone. and her doctor are exploring the possibilities that she and her family could be carriers of a gene that made her son have MDS. The doctor did confirm that her son has MDS when he had previously been diagnosed as having Trisomy21 Down syndrome. This is not an uncommon occurrence. Many individuals who are diagnosed with Down syndrome later have more extensive tests and discover that they have MDS. The reason for the large percent of misdiagnosis is because of the small number of cells that are typically tested. and I have enjoyed many conversations on the phone. She says that her family has physical characteristics that people with Down syndrome can have. This is why she believes she is a carrier of this gene.Please know that if this is found to be true, then wouldbe the first of itskind. Typically, MDS happens when the cells divide and have nothing to do with inheritance. And, it is very typical for the average person to have a low amount of trisomy 21 cells in their body. (I have 0.1 in my blood and 0.4 in my skin!) According to our main MDS research study at Virginia Commonwealth University/Medical College of Virginia " All people have a small amount of the extra chromosome " So, weare all anxiously awaiting the results from 's doctor to see what is next.I just wanted to be sure that everyone understood this situation, because as a new parent especially, this can become a very confusing topic of discussion. Thanks for bringing in such a lively discussion to our board! I have thoroughly enjoyed it!Kristy TenEyck wrote:You are understanding correctly. Apparently my sibs, my nieces amd nephews and my maternal lineage does as well. We are waiting on the chromosomal results for all. (My sonhad his back first.)Apparently, my 20 year old displays a majority of the symptoms. We think my husband may have it also. The geneticist says it is familial and inherited, but we are currently looking into blood only.http://discoverspaces.live.com?source=hmtag1 & loc=us[Non-text portions of this message have been removed]---------------------------------Everyone is raving about the all-new Yahoo! Mail beta.[Non-textportions of this message have been removed] __________________________________________________________Express yourself with gadgets on Windows Live Spaceshttp://discoverspaces.live.com?source=hmtag1 & loc=us[Non-text portions of this message have been removed]__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2006 Report Share Posted December 1, 2006 We have invited a very large number of researchers to our conference. We already have 5 confirmed researchers attending to conduct research, but do expect many more. No research cost money to you. Research is taken care of by grants. As for the blood and skin tests I am not sure if VCU will be doing this year or not because they seem to be wrapping up their study. I will find out soon and let everyone know with our conference announcement Kristy TenEyck wrote: Cool. Will they do that this time? Does it cost? To: MosaicDS@...: imdsapresident@...: Thu, 30 Nov 2006 14:58:34 -0800Subject: RE: Clarifying Familial MDS yes they took blood and skin samples TenEyck wrote: I am confused, Kristy. Sorry.So, they actually took blood and skin samples?To: MosaicDS@...: imdsapresident@...: Thu, 30 Nov 2006 13:42:28 -0800Subject: RE: Clarifying Familial MDSNo, this was part of the standard research. They were comparing family cells to the affected individual. Kristy TenEyck wrote:Yes, I am aware that all people have some sort of trisomic cells in their body somewhere. Also, I am aware (as you know) that many more of us are Mosaic than known due to lack of testing everyone at birth.I just wondered if you did a test to rule out MDS and this is what they found?To: MosaicDS@...: imdsapresident@...: Thu, 30 Nov 2006 11:57:09 -0800Subject: RE: Clarifying Familial MDSWe just now found out about the percentages. In 2004 when we had our first MDS Research and Awareness conference in Virginia, we participated in the MDS research at VCU. Dr. -Cook (head of the research) is just now wrapping up this extensive research study and has sent me (and anyone else who was involved in the research) My husband did not participate in the research. But, as I said before theresearch paper said that ALL people have a low percentage of trisomy 21. I plan to talk with Dr. J-C about this more.Kristy TenEyck wrote:Thanks for the clarification Kristy. :0) We are very excited!BTW, I did not know this about your percentages in your blood and skin. How did you find this out?(That kinda shows that " genes are inherited " .) Does your husband know what his percentages are?To: MosaicDS@...: imdsapresident@...: Thu, 30 Nov 2006 10:12:52 -0800Subject: Clarifying Familial MDSHi EveryoneI wanted tobe sure to clarify some things concerning 's comments on Familial MDS just so you all will not be confused or worried that this is something that happens with everyone. and her doctor are exploring the possibilities that she and her family could be carriers of a gene that made her son have MDS. The doctor did confirm that her son has MDS when he had previously been diagnosed as having Trisomy21 Down syndrome. This is not an uncommon occurrence. Many individuals who are diagnosed with Down syndrome later have more extensive tests and discover that they have MDS. The reason for the large percent of misdiagnosis is because of the small number of cells that are typically tested. and I have enjoyed many conversations on the phone. She says that her family has physical characteristics that people with Down syndrome can have. This is why she believes she is a carrier of this gene.Please know that if this is found to be true, then wouldbe the first of itskind. Typically, MDS happens when the cells divide and have nothing to do with inheritance. And, it is very typical for the average person to have a low amount of trisomy 21 cells in their body. (I have 0.1 in my blood and 0.4 in my skin!) According to our main MDS research study at Virginia Commonwealth University/Medical College of Virginia " All people have a small amount of the extra chromosome " So, weare all anxiously awaiting the results from 's doctor to see what is next.I just wanted to be sure that everyone understood this situation, because as a new parent especially, this can become a very confusing topic of discussion. Thanks for bringing in such a lively discussion to our board! I have thoroughly enjoyed it!Kristy TenEyck wrote:You are understanding correctly. Apparently my sibs, my nieces amd nephews and my maternal lineage does as well. We are waiting on the chromosomal results for all. (My sonhad his back first.)Apparently, my 20 year old displays a majority of the symptoms. We think my husband may have it also. The geneticist says it is familial and inherited, but we are currently looking into blood only.http://discoverspaces.live.com?source=hmtag1 & loc=us[Non-text portions of this message have been removed]---------------------------------Everyone is raving about the all-new Yahoo! Mail beta.[Non-textportions of this message have been removed] __________________________________________________________Express yourself with gadgets on Windows Live Spaceshttp://discoverspaces.live.com?source=hmtag1 & loc=us[Non-text portions of this message have been removed]__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2006 Report Share Posted December 1, 2006 Kristy, Can you confirm that they do not need anymore participants? I was interested in the study but haven't done anything about it yet. Thanks! gwyn mom to mark mds 6months You are understanding correctly. Apparently my sibs, my nieces amd nephews and my maternal lineage does as well. We are waiting on the chromosomal results for all. (My sonhad his back first.)Apparently, my 20 year old displays a majority of the symptoms. We think my husband may have it also. The > geneticist says it is familial and inherited, but we are currently looking into blood only.http://discoverspaces.live.com?source=hmtag1 & loc=us[Non- text portions of this message have been removed]--------------------- ------------Everyone is raving about the all-new Yahoo! Mail beta. [Non-textportions of this message have been removed] __________________________________________________________Express yourself with gadgets on Windows Live Spaceshttp://discoverspaces.live.com?source=hmtag1 & loc=us[Non-text portions of this message have been removed] __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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