Carrier testing for extended family members

[Augustmom0003]

Tammy,

urrrrrrrg! That is maddening! I've always wondered why friends and even strangers seemed to care more (donated, walked, etc.) and then I barely hear from any of my family?!?! It really hurts sometimes....

 

[Augustmom0003]

Tammy,

urrrrrrrg! That is maddening! I've always wondered why friends and even strangers seemed to care more (donated, walked, etc.) and then I barely hear from any of my family?!?! It really hurts sometimes....

 

[Augustmom0003]

Tammy,

urrrrrrrg! That is maddening! I've always wondered why friends and even strangers seemed to care more (donated, walked, etc.) and then I barely hear from any of my family?!?! It really hurts sometimes....

 

[Alyssa]

I have suggested to all the 20-30 year old nieces and nephews that before they get married and/or start having babies they should be tested, since their parent is a sibling to my husband and they may have the same gene..... but nobody seems all that interested.... all you can do is give the info but that's about it

 

[Alyssa]

I have suggested to all the 20-30 year old nieces and nephews that before they get married and/or start having babies they should be tested, since their parent is a sibling to my husband and they may have the same gene..... but nobody seems all that interested.... all you can do is give the info but that's about it

 

[Alyssa]

I have suggested to all the 20-30 year old nieces and nephews that before they get married and/or start having babies they should be tested, since their parent is a sibling to my husband and they may have the same gene..... but nobody seems all that interested.... all you can do is give the info but that's about it

 

[brematt]

My son was dx in Dec, at age 11. I swear my parents had a genetic test done the next day to see which side of the family it came from! They even contacted extended family on both sides to let them know they were having it done. The difficulty now is this, who should start the testing? For instance my sister has 3 kids. Does she get a genetic test done to see if she's a carrier first, then go from there? Or do you go straight to testing the 3 kids?? I only have one other aunt who has grown kids. Same thing, does she get tested first, then branch out from there? Also, re: siblings and first cousins w/o (obvious) symptoms--do they get tested now, or later before starting a family? I've heard advice both ways. My husband's family is more like a lot of other responses to this post. Avoidance means no bad news. That is frustrating. It seems selfish to me.

 

[brematt]

My son was dx in Dec, at age 11. I swear my parents had a genetic test done the next day to see which side of the family it came from! They even contacted extended family on both sides to let them know they were having it done. The difficulty now is this, who should start the testing? For instance my sister has 3 kids. Does she get a genetic test done to see if she's a carrier first, then go from there? Or do you go straight to testing the 3 kids?? I only have one other aunt who has grown kids. Same thing, does she get tested first, then branch out from there? Also, re: siblings and first cousins w/o (obvious) symptoms--do they get tested now, or later before starting a family? I've heard advice both ways. My husband's family is more like a lot of other responses to this post. Avoidance means no bad news. That is frustrating. It seems selfish to me.

 

[brematt]

My son was dx in Dec, at age 11. I swear my parents had a genetic test done the next day to see which side of the family it came from! They even contacted extended family on both sides to let them know they were having it done. The difficulty now is this, who should start the testing? For instance my sister has 3 kids. Does she get a genetic test done to see if she's a carrier first, then go from there? Or do you go straight to testing the 3 kids?? I only have one other aunt who has grown kids. Same thing, does she get tested first, then branch out from there? Also, re: siblings and first cousins w/o (obvious) symptoms--do they get tested now, or later before starting a family? I've heard advice both ways. My husband's family is more like a lot of other responses to this post. Avoidance means no bad news. That is frustrating. It seems selfish to me.