During the podcast, the topic of my children came up. I went all gushy mushy and said that my kids are THE BEST choice I have ever made in my life, and this is true! However, a comment was made that ALL SIX of my children had the 50-50 chance of passing NF down to their own children.
I wanted to clear this up.....with no offense to the host of the podcast. I am simply trying to help educate the public.
"The only way to get Neurofibromatosis type 1 is to have a change (mutation) in the NF1 gene. A mutation in the NF1 gene can be inherited from a parent ("run in the family") or appear for the first time in a family. A person with neurofibromatosis type 1 has a 50 percent chance of passing the change in the NF1 gene onto a child (regardless of gender) with each pregnancy. Even people with NF1 who are the first ones in the family affected have a 50% chance with each pregnancy of passing on the change in the NF1 gene. (This pattern is called autosomal dominant inheritance.) A person with a mutation in NF1 will always get the disease. This means that neurofibromatosis type 1 does not skip generations. If a child does not inherit the disease from an affected parent it means that the child has a very low chance (the same as the rest of the population) of having a child with neurofibromatosis type 1." www.genome.gov/16015147
This states that I, myself have Neurofibromatosis type 1...therefore, I have a 50-50 chance with EACH pregnancy to pas on NF. That saying I have passed NF down to THREE of my SIX kids. The THREE who have a confirmed diagnoses, have the 50-50 chance to pass this on to THEIR kids. The THREE who do NOT have NF, have the same chances of having a child with NF, as anyone without the mutated gene.
I did not want to address this during the podcast, because I wanted to make sure things stayed on schedule, and I also was not sure that I heard the comment correctly.
After coming in from the podcast, my husband did ask me about this comment, and since then, I have received several emails, also addressing what was said during the podcast.
Sometimes what we hear as parents, from doctors who claim to know it all, still needs further research. I NEVER walk away from a doctor visit anymore with the information I receive as something set in stone.
I research, ask MANY MANY questions, research more, then ask more questions.
Thanks again to Jacquie Rogers, Lillian Cauldwell (Internet Voices Radio), Chef Michael and all those who listened.