Katy's diagnosis in August came as a complete shock, as we have no known cases in our families (like many of you on this site). Since then we have tried to inform family members about the genetics with various success.
We feel very strongly that our nieces and nephews should be tested to see if they are carriers. The fact that our state now screens newborns for CF and also notifies the parents if the infant is just (!) a carrier seems to support our sense that this is important. And we don't mean they should be tested RIGHT NOW, we would just like some assurances from the parents (our brothers and sisters) that they will inform/test their kids when the time is right.
Are we wrong? Is it none of our business? Also, have any of your parents had themselves tested to see which side of the family might need to be concerned - like my cousins, to see if they are carriers. I realize you could go on and on with it. I'm just wondering if we are too freakish about this and what others have done. We're not very popular with some members of the family when we try to talk about it.
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
We feel very strongly that our nieces and nephews should be tested to see if they are carriers. The fact that our state now screens newborns for CF and also notifies the parents if the infant is just (!) a carrier seems to support our sense that this is important. And we don't mean they should be tested RIGHT NOW, we would just like some assurances from the parents (our brothers and sisters) that they will inform/test their kids when the time is right.
Are we wrong? Is it none of our business? Also, have any of your parents had themselves tested to see which side of the family might need to be concerned - like my cousins, to see if they are carriers. I realize you could go on and on with it. I'm just wondering if we are too freakish about this and what others have done. We're not very popular with some members of the family when we try to talk about it.
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)