Family history discovered?

[ktsmom]

I have recently been reminded by a visit to the family cemetery (in another state) that one of my grandmothers had 5 siblings that died at age 3 or younger. These children were born in the 1890's. I remembered this when Katy was diagnosed, but I've just now been researching the details.

One detail that I forgot was that at the time, the family decided it was <i>due to bad well water</i>. This implies to me that these poor children were having belly issues. My grandmother and two other siblings survived into adulthood and in fact two of them lived very long lives.

I am heart broken for my great grandmother and these babies. I want to know more. I'm practically obsessed by it. I realize that these children may not have died from CF and I know the odds of having <b>5</b> out of 8 children with CF are pretty far out. But I've let my mind travel to the genetics of it all and I want to urge the generation above me to get carrier tested.

Pretty much everyone in my family thinks I"m nuts and that I need to let this go. I'm wondering how you all feel. So many of us don't know of a family history, and here I feel like I might have found mine.

 

[ktsmom]

I have recently been reminded by a visit to the family cemetery (in another state) that one of my grandmothers had 5 siblings that died at age 3 or younger. These children were born in the 1890's. I remembered this when Katy was diagnosed, but I've just now been researching the details.

One detail that I forgot was that at the time, the family decided it was <i>due to bad well water</i>. This implies to me that these poor children were having belly issues. My grandmother and two other siblings survived into adulthood and in fact two of them lived very long lives.

I am heart broken for my great grandmother and these babies. I want to know more. I'm practically obsessed by it. I realize that these children may not have died from CF and I know the odds of having <b>5</b> out of 8 children with CF are pretty far out. But I've let my mind travel to the genetics of it all and I want to urge the generation above me to get carrier tested.

Pretty much everyone in my family thinks I"m nuts and that I need to let this go. I'm wondering how you all feel. So many of us don't know of a family history, and here I feel like I might have found mine.

 

[ktsmom]

I have recently been reminded by a visit to the family cemetery (in another state) that one of my grandmothers had 5 siblings that died at age 3 or younger. These children were born in the 1890's. I remembered this when Katy was diagnosed, but I've just now been researching the details.

One detail that I forgot was that at the time, the family decided it was <i>due to bad well water</i>. This implies to me that these poor children were having belly issues. My grandmother and two other siblings survived into adulthood and in fact two of them lived very long lives.

I am heart broken for my great grandmother and these babies. I want to know more. I'm practically obsessed by it. I realize that these children may not have died from CF and I know the odds of having <b>5</b> out of 8 children with CF are pretty far out. But I've let my mind travel to the genetics of it all and I want to urge the generation above me to get carrier tested.

Pretty much everyone in my family thinks I"m nuts and that I need to let this go. I'm wondering how you all feel. So many of us don't know of a family history, and here I feel like I might have found mine.

 

[ktsmom]

I have recently been reminded by a visit to the family cemetery (in another state) that one of my grandmothers had 5 siblings that died at age 3 or younger. These children were born in the 1890's. I remembered this when Katy was diagnosed, but I've just now been researching the details.

One detail that I forgot was that at the time, the family decided it was <i>due to bad well water</i>. This implies to me that these poor children were having belly issues. My grandmother and two other siblings survived into adulthood and in fact two of them lived very long lives.

I am heart broken for my great grandmother and these babies. I want to know more. I'm practically obsessed by it. I realize that these children may not have died from CF and I know the odds of having <b>5</b> out of 8 children with CF are pretty far out. But I've let my mind travel to the genetics of it all and I want to urge the generation above me to get carrier tested.

Pretty much everyone in my family thinks I"m nuts and that I need to let this go. I'm wondering how you all feel. So many of us don't know of a family history, and here I feel like I might have found mine.

 

[ktsmom]

I have recently been reminded by a visit to the family cemetery (in another state) that one of my grandmothers had 5 siblings that died at age 3 or younger. These children were born in the 1890's. I remembered this when Katy was diagnosed, but I've just now been researching the details.

One detail that I forgot was that at the time, the family decided it was <i>due to bad well water</i>. This implies to me that these poor children were having belly issues. My grandmother and two other siblings survived into adulthood and in fact two of them lived very long lives.

I am heart broken for my great grandmother and these babies. I want to know more. I'm practically obsessed by it. I realize that these children may not have died from CF and I know the odds of having <b>5</b> out of 8 children with CF are pretty far out. But I've let my mind travel to the genetics of it all and I want to urge the generation above me to get carrier tested.

Pretty much everyone in my family thinks I"m nuts and that I need to let this go. I'm wondering how you all feel. So many of us don't know of a family history, and here I feel like I might have found mine.

 

[ktsmom]

I have recently been reminded by a visit to the family cemetery (in another state) that one of my grandmothers had 5 siblings that died at age 3 or younger. These children were born in the 1890's. I remembered this when Katy was diagnosed, but I've just now been researching the details.

One detail that I forgot was that at the time, the family decided it was <i>due to bad well water</i>. This implies to me that these poor children were having belly issues. My grandmother and two other siblings survived into adulthood and in fact two of them lived very long lives.

I am heart broken for my great grandmother and these babies. I want to know more. I'm practically obsessed by it. I realize that these children may not have died from CF and I know the odds of having <b>5</b> out of 8 children with CF are pretty far out. But I've let my mind travel to the genetics of it all and I want to urge the generation above me to get carrier tested.

Pretty much everyone in my family thinks I"m nuts and that I need to let this go. I'm wondering how you all feel. So many of us don't know of a family history, and here I feel like I might have found mine.

 

[okok]

I think it is a good idea if you have a large, extended family so that you can inform your cousins on either your mom or dad's side as to the risk that they could be CF carriers. In our family, my dad is/was completely against the idea of carrier testing. He loves his grandkids and thinks had we known we would not have had them. However, since my mom was ok with it, she got tested and was negative so we know that my dad was the carrier. (We never did tell dad that he was a carrier.) We basically have to be discreet about talking about it in front him though with his family but can in more private situations.

On the other hand, i think it is good that people be aware of CF regardless of whether or not they have known family history. I told my mom not to joyfully announce to her sisters that they didn't need to worry about CF in their grandkids since that is not exactly true. There is after all still a possibility that they are carriers (or that their childern are carriers). The good thing is that prenatal carrier screening and newborn screening are becoming much more prevalent.

good luck! you are certainly not nuts... maybe your family just doesn't quite understand.

 

[okok]

I think it is a good idea if you have a large, extended family so that you can inform your cousins on either your mom or dad's side as to the risk that they could be CF carriers. In our family, my dad is/was completely against the idea of carrier testing. He loves his grandkids and thinks had we known we would not have had them. However, since my mom was ok with it, she got tested and was negative so we know that my dad was the carrier. (We never did tell dad that he was a carrier.) We basically have to be discreet about talking about it in front him though with his family but can in more private situations.

On the other hand, i think it is good that people be aware of CF regardless of whether or not they have known family history. I told my mom not to joyfully announce to her sisters that they didn't need to worry about CF in their grandkids since that is not exactly true. There is after all still a possibility that they are carriers (or that their childern are carriers). The good thing is that prenatal carrier screening and newborn screening are becoming much more prevalent.

good luck! you are certainly not nuts... maybe your family just doesn't quite understand.

 

[okok]

I think it is a good idea if you have a large, extended family so that you can inform your cousins on either your mom or dad's side as to the risk that they could be CF carriers. In our family, my dad is/was completely against the idea of carrier testing. He loves his grandkids and thinks had we known we would not have had them. However, since my mom was ok with it, she got tested and was negative so we know that my dad was the carrier. (We never did tell dad that he was a carrier.) We basically have to be discreet about talking about it in front him though with his family but can in more private situations.

On the other hand, i think it is good that people be aware of CF regardless of whether or not they have known family history. I told my mom not to joyfully announce to her sisters that they didn't need to worry about CF in their grandkids since that is not exactly true. There is after all still a possibility that they are carriers (or that their childern are carriers). The good thing is that prenatal carrier screening and newborn screening are becoming much more prevalent.

good luck! you are certainly not nuts... maybe your family just doesn't quite understand.

 

[okok]

I think it is a good idea if you have a large, extended family so that you can inform your cousins on either your mom or dad's side as to the risk that they could be CF carriers. In our family, my dad is/was completely against the idea of carrier testing. He loves his grandkids and thinks had we known we would not have had them. However, since my mom was ok with it, she got tested and was negative so we know that my dad was the carrier. (We never did tell dad that he was a carrier.) We basically have to be discreet about talking about it in front him though with his family but can in more private situations.

On the other hand, i think it is good that people be aware of CF regardless of whether or not they have known family history. I told my mom not to joyfully announce to her sisters that they didn't need to worry about CF in their grandkids since that is not exactly true. There is after all still a possibility that they are carriers (or that their childern are carriers). The good thing is that prenatal carrier screening and newborn screening are becoming much more prevalent.

good luck! you are certainly not nuts... maybe your family just doesn't quite understand.

 

[okok]

I think it is a good idea if you have a large, extended family so that you can inform your cousins on either your mom or dad's side as to the risk that they could be CF carriers. In our family, my dad is/was completely against the idea of carrier testing. He loves his grandkids and thinks had we known we would not have had them. However, since my mom was ok with it, she got tested and was negative so we know that my dad was the carrier. (We never did tell dad that he was a carrier.) We basically have to be discreet about talking about it in front him though with his family but can in more private situations.

On the other hand, i think it is good that people be aware of CF regardless of whether or not they have known family history. I told my mom not to joyfully announce to her sisters that they didn't need to worry about CF in their grandkids since that is not exactly true. There is after all still a possibility that they are carriers (or that their childern are carriers). The good thing is that prenatal carrier screening and newborn screening are becoming much more prevalent.

good luck! you are certainly not nuts... maybe your family just doesn't quite understand.

 

[okok]

I think it is a good idea if you have a large, extended family so that you can inform your cousins on either your mom or dad's side as to the risk that they could be CF carriers. In our family, my dad is/was completely against the idea of carrier testing. He loves his grandkids and thinks had we known we would not have had them. However, since my mom was ok with it, she got tested and was negative so we know that my dad was the carrier. (We never did tell dad that he was a carrier.) We basically have to be discreet about talking about it in front him though with his family but can in more private situations.

On the other hand, i think it is good that people be aware of CF regardless of whether or not they have known family history. I told my mom not to joyfully announce to her sisters that they didn't need to worry about CF in their grandkids since that is not exactly true. There is after all still a possibility that they are carriers (or that their childern are carriers). The good thing is that prenatal carrier screening and newborn screening are becoming much more prevalent.

good luck! you are certainly not nuts... maybe your family just doesn't quite understand.

 

[LReyna]

I hope you have better luck at getting your family members to understand the way that genetics work. My granddaughter was born in 2005 and was diagnosed while my daughter was pregnant and I guess like you I wondered where it came from since neither side of the family had a history. I also had my son tested to find out if he also was a carrier at which he was and so the curiosity went further to see which side of the family it came from so I was tested and it wasn't me so we knew it came from my husband so of course he was tested just to verify it and we have stressed to his family which he comes from a big family he is the youngest of 9 and to this day not one family member has been tested to see if they could be carriers and possibly passed the gene to their children which are all having kids of their own not knowing that they could posssibly be passing this gene to their grandchildren. This disease may not ever show up again in this family but if it does we tried to get them to understand it but they wouldn't listen. We just had our great strides walk 2 weeks ago and we even went as far as to send letters to cousins and family members that we haven't met before to let them know that this disease could possibly show up in the family or maybe it has and since we haven't met alot of them maybe it has been in the family before and we just didn't know it. My SIL was even doing a family history book for my husbands side of the family and didn't feel it was necessary to add about my granddaughters CF in the family medical history because it never been heard of before it must be something that will only affect my family so I just hope for their sake that in years to come this disease doesn't make its appearance again. Sorry this comment is so long but when i get on this subject of families I could go on forever.

 

[LReyna]

I hope you have better luck at getting your family members to understand the way that genetics work. My granddaughter was born in 2005 and was diagnosed while my daughter was pregnant and I guess like you I wondered where it came from since neither side of the family had a history. I also had my son tested to find out if he also was a carrier at which he was and so the curiosity went further to see which side of the family it came from so I was tested and it wasn't me so we knew it came from my husband so of course he was tested just to verify it and we have stressed to his family which he comes from a big family he is the youngest of 9 and to this day not one family member has been tested to see if they could be carriers and possibly passed the gene to their children which are all having kids of their own not knowing that they could posssibly be passing this gene to their grandchildren. This disease may not ever show up again in this family but if it does we tried to get them to understand it but they wouldn't listen. We just had our great strides walk 2 weeks ago and we even went as far as to send letters to cousins and family members that we haven't met before to let them know that this disease could possibly show up in the family or maybe it has and since we haven't met alot of them maybe it has been in the family before and we just didn't know it. My SIL was even doing a family history book for my husbands side of the family and didn't feel it was necessary to add about my granddaughters CF in the family medical history because it never been heard of before it must be something that will only affect my family so I just hope for their sake that in years to come this disease doesn't make its appearance again. Sorry this comment is so long but when i get on this subject of families I could go on forever.

 

[LReyna]

I hope you have better luck at getting your family members to understand the way that genetics work. My granddaughter was born in 2005 and was diagnosed while my daughter was pregnant and I guess like you I wondered where it came from since neither side of the family had a history. I also had my son tested to find out if he also was a carrier at which he was and so the curiosity went further to see which side of the family it came from so I was tested and it wasn't me so we knew it came from my husband so of course he was tested just to verify it and we have stressed to his family which he comes from a big family he is the youngest of 9 and to this day not one family member has been tested to see if they could be carriers and possibly passed the gene to their children which are all having kids of their own not knowing that they could posssibly be passing this gene to their grandchildren. This disease may not ever show up again in this family but if it does we tried to get them to understand it but they wouldn't listen. We just had our great strides walk 2 weeks ago and we even went as far as to send letters to cousins and family members that we haven't met before to let them know that this disease could possibly show up in the family or maybe it has and since we haven't met alot of them maybe it has been in the family before and we just didn't know it. My SIL was even doing a family history book for my husbands side of the family and didn't feel it was necessary to add about my granddaughters CF in the family medical history because it never been heard of before it must be something that will only affect my family so I just hope for their sake that in years to come this disease doesn't make its appearance again. Sorry this comment is so long but when i get on this subject of families I could go on forever.

 

[LReyna]

I hope you have better luck at getting your family members to understand the way that genetics work. My granddaughter was born in 2005 and was diagnosed while my daughter was pregnant and I guess like you I wondered where it came from since neither side of the family had a history. I also had my son tested to find out if he also was a carrier at which he was and so the curiosity went further to see which side of the family it came from so I was tested and it wasn't me so we knew it came from my husband so of course he was tested just to verify it and we have stressed to his family which he comes from a big family he is the youngest of 9 and to this day not one family member has been tested to see if they could be carriers and possibly passed the gene to their children which are all having kids of their own not knowing that they could posssibly be passing this gene to their grandchildren. This disease may not ever show up again in this family but if it does we tried to get them to understand it but they wouldn't listen. We just had our great strides walk 2 weeks ago and we even went as far as to send letters to cousins and family members that we haven't met before to let them know that this disease could possibly show up in the family or maybe it has and since we haven't met alot of them maybe it has been in the family before and we just didn't know it. My SIL was even doing a family history book for my husbands side of the family and didn't feel it was necessary to add about my granddaughters CF in the family medical history because it never been heard of before it must be something that will only affect my family so I just hope for their sake that in years to come this disease doesn't make its appearance again. Sorry this comment is so long but when i get on this subject of families I could go on forever.

 

[LReyna]

I hope you have better luck at getting your family members to understand the way that genetics work. My granddaughter was born in 2005 and was diagnosed while my daughter was pregnant and I guess like you I wondered where it came from since neither side of the family had a history. I also had my son tested to find out if he also was a carrier at which he was and so the curiosity went further to see which side of the family it came from so I was tested and it wasn't me so we knew it came from my husband so of course he was tested just to verify it and we have stressed to his family which he comes from a big family he is the youngest of 9 and to this day not one family member has been tested to see if they could be carriers and possibly passed the gene to their children which are all having kids of their own not knowing that they could posssibly be passing this gene to their grandchildren. This disease may not ever show up again in this family but if it does we tried to get them to understand it but they wouldn't listen. We just had our great strides walk 2 weeks ago and we even went as far as to send letters to cousins and family members that we haven't met before to let them know that this disease could possibly show up in the family or maybe it has and since we haven't met alot of them maybe it has been in the family before and we just didn't know it. My SIL was even doing a family history book for my husbands side of the family and didn't feel it was necessary to add about my granddaughters CF in the family medical history because it never been heard of before it must be something that will only affect my family so I just hope for their sake that in years to come this disease doesn't make its appearance again. Sorry this comment is so long but when i get on this subject of families I could go on forever.

 

[LReyna]

I hope you have better luck at getting your family members to understand the way that genetics work. My granddaughter was born in 2005 and was diagnosed while my daughter was pregnant and I guess like you I wondered where it came from since neither side of the family had a history. I also had my son tested to find out if he also was a carrier at which he was and so the curiosity went further to see which side of the family it came from so I was tested and it wasn't me so we knew it came from my husband so of course he was tested just to verify it and we have stressed to his family which he comes from a big family he is the youngest of 9 and to this day not one family member has been tested to see if they could be carriers and possibly passed the gene to their children which are all having kids of their own not knowing that they could posssibly be passing this gene to their grandchildren. This disease may not ever show up again in this family but if it does we tried to get them to understand it but they wouldn't listen. We just had our great strides walk 2 weeks ago and we even went as far as to send letters to cousins and family members that we haven't met before to let them know that this disease could possibly show up in the family or maybe it has and since we haven't met alot of them maybe it has been in the family before and we just didn't know it. My SIL was even doing a family history book for my husbands side of the family and didn't feel it was necessary to add about my granddaughters CF in the family medical history because it never been heard of before it must be something that will only affect my family so I just hope for their sake that in years to come this disease doesn't make its appearance again. Sorry this comment is so long but when i get on this subject of families I could go on forever.

 

[LReyna]

I hope you have better luck at getting your family members to understand the way that genetics work. My granddaughter was born in 2005 and was diagnosed while my daughter was pregnant and I guess like you I wondered where it came from since neither side of the family had a history. I also had my son tested to find out if he also was a carrier at which he was and so the curiosity went further to see which side of the family it came from so I was tested and it wasn't me so we knew it came from my husband so of course he was tested just to verify it and we have stressed to his family which he comes from a big family he is the youngest of 9 and to this day not one family member has been tested to see if they could be carriers and possibly passed the gene to their children which are all having kids of their own not knowing that they could posssibly be passing this gene to their grandchildren. This disease may not ever show up again in this family but if it does we tried to get them to understand it but they wouldn't listen. We just had our great strides walk 2 weeks ago and we even went as far as to send letters to cousins and family members that we haven't met before to let them know that this disease could possibly show up in the family or maybe it has and since we haven't met alot of them maybe it has been in the family before and we just didn't know it. My SIL was even doing a family history book for my husbands side of the family and didn't feel it was necessary to add about my granddaughters CF in the family medical history because it never been heard of before it must be something that will only affect my family so I just hope for their sake that in years to come this disease doesn't make its appearance again. Sorry this comment is so long but when i get on this subject of families I could go on forever.

 

[LReyna]

I hope you have better luck at getting your family members to understand the way that genetics work. My granddaughter was born in 2005 and was diagnosed while my daughter was pregnant and I guess like you I wondered where it came from since neither side of the family had a history. I also had my son tested to find out if he also was a carrier at which he was and so the curiosity went further to see which side of the family it came from so I was tested and it wasn't me so we knew it came from my husband so of course he was tested just to verify it and we have stressed to his family which he comes from a big family he is the youngest of 9 and to this day not one family member has been tested to see if they could be carriers and possibly passed the gene to their children which are all having kids of their own not knowing that they could posssibly be passing this gene to their grandchildren. This disease may not ever show up again in this family but if it does we tried to get them to understand it but they wouldn't listen. We just had our great strides walk 2 weeks ago and we even went as far as to send letters to cousins and family members that we haven't met before to let them know that this disease could possibly show up in the family or maybe it has and since we haven't met alot of them maybe it has been in the family before and we just didn't know it. My SIL was even doing a family history book for my husbands side of the family and didn't feel it was necessary to add about my granddaughters CF in the family medical history because it never been heard of before it must be something that will only affect my family so I just hope for their sake that in years to come this disease doesn't make its appearance again. Sorry this comment is so long but when i get on this subject of families I could go on forever.