Monday, May 31, 2010

Thoughts on the Pod Cast Part Two

I was asked the question "What do you wish the general public knew about NF?" And my answer was simply that I wished NF was as well known as other disorders, and that the information being put out there was accurate and updated.

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."

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.

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