How did I get NF?

I have NF 1 and I always have, its not hereditary in my family tho, no one has ever had it. Iv read that It could be from a mutation, but that's not what I'm trying to find out, I want to understand WHERE/HOW it came from. "where did the cells go wrong"

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they same with me as far as i knw mine frm a mution! i guess it just happens!

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The NF gene is a particularly large one and therefore may just be more prone to breakage. In other words, it may be a totally random event OR....it may be that a spontaneous mutation isn't always as spontaneous as we once believed. Some studies on paternal age for example have shown a slight increased risk of having an NF child (as it has with several other autosomal dominant disorders). Though no other environmental causes have been found, there are so many things that can potentially cause genetic damage. In other words, there is just no way to know why your mutation occurred.

Cindy

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Cindy --

I hadn't read that some studies on paternal age show a slight increased risk of having an NF child. What age range are we talking about here?

Thanks.

- Artie

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It's a debate that's been going on for quite awhile. Here are a quick couple of references, there are others.

http://www.ncbi.nlm.nih.gov/pubmed/9358268

http://www.ncbi.nlm.nih.gov/pubmed/22302476

Cindy

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Chrosome 17 spontaneously mutated then. It's not uncommon for this to happen.

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My son also has a spontaneous occurance of NF1 and his father was 34 when he was conceived so maybe there is a connection. CindyLouWho are you a doctor? You seem so knowledgeable and you give such great advice, just curious!

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Nope. Not a doctor but thanks....

The thing is that even if there is a slight increase in risk due to parental age, statistically the majority of kids born with NF are still going to have younger parents simply because that is the age that most people have children....of course, that has changed somewhat over the past decade with more and more parents putting off having kids until their late 30s and early 40s. (I was 36 when my twins were born, my hubby was 41). It will be interesting to see if we start to see this reflected in the stats.

Cindy

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NF1 happens in 1 in 3,000 births. I've read that 50% of those are spontaneous. As one reader pointed out, it is due to a mutation of chromosome 17. As far as how this happens and why, that's why the CTF and doctors across the country are raising do much money. More research needs to be done.

Hang in there and breath. Twenty tears ago, we didn't know it was a mutation on chromosome 17. We've come a long way, but more does need to be done.

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I've been asking myself that question for years I just Don't know how I got so lucky.

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my mom had it spontaneously mutate in her as well she started getting the fibromas at 24. me and my little brother both have it.

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The instant the sperm and egg are joined, the instant conception occurs the Gene for what ever reason mutates. The Chromosone breaks more or less to say , If Drs or scienetists know why they could prevent this and other disorders would be prevented or possible cured. No one in My family has this not even My child....So for what reason I wish I knew so I could explain why to those Who Ask , I know I will get an answer one day when I stant Before Our Creator YHWH ( G-d)

I have NF ....NF Doesnot have Me!!!!!!

Kim

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In autosomal disorders where paternal age is believed to be associated with higher risk of spontaneous mutation the theory is generally that male germ line cells continue to divide and that this repetition eventually raises the risk of a copying error. New mutations are frequently the result of germ cells (not to be confused with gonadal mosaicism).

Quote:NF1 and NF2 are called autosomal dominant genetic disorders. Half of all cases are inherited from a parent who has NF1 or NF2; half of all cases are not inherited but the result of a new or spontaneous mutation (change) in the sperm or egg cell. Each child of a parent with NF1 or NF2 has a 50% chance of inheriting the gene and developing NF1 or NF2. The type of NF inherited by the child is always the same as that of the affected parent (i.e. if the parent has NF1, each child is at 50% risk for NF1. If the parent has NF2, each child has a 50% chance to inherit NF2). However, the severity and the kind of manifestations may differ from person to person within a family.

When a parent has NF1 or NF2, there is a 50% chance with each pregnancy for the child to receive the NF1 or NF2 gene, and a 50% chance for the child to receive two unaffected genes and to be free of NF1 or NF2. The child with NF1 or NF2, as a result of a new mutation, does have the 50-50 chance of passing the NF1 or NF2 gene on to his or her children.

Unaffected parents who have a child born with NF1 or NF2 because of a spontaneous mutation do not have a 50-50 risk in future pregnancies. Their chance for another child with NF1 is about the same as that of any couple in the general population, that is, one chance in 7,000.

One additional birth in every 7,000 results in a child who has inherited NF1 from a parent with the disorder. Thus, a total of 2 children in 7,000 or 1 in 3,500 are born with NF1." unquote

http://www.ctf.org/Living-with-NF/what-is-nf.html

Cindy

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NF is a spontantous mutation of a gene in chrom. 17 (chrom 22 for nf 2) one in 3000-4000 births will get NF with no parent having it. It does not skip generations. Sperm and eggs age will have no bearing on getting NF

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Nooo.....that is not entirely correct. Please take a look at the information provided and at the other studies on this subject. They wouldn't be looking at paternal and maternal age in spontaneous NF if the egg and sperm were not relevant.

I think people have trouble understanding that even when NF is a spontaneous mutation, meaning it is NOT inherited from an affected parent, that the egg and sperm can still be involved. That has nothing to do with being a carrier or skipping generations.

Cindy

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My Mother was 20(ish) when she got pregnant with me and my father was 27(ish) I am my mothers 1st child, my fathers 3rd. I am the only one in my family that has it. I decided since there is no cure for it I chose NOT to have children being there is a 50/50 chance of passing it on. So in words the BUCK(NF) stops here with me .... I do not look down on people who have NF that decide to have children, but for me I could not have beared the guilt if I did have a child and passed it on knowing it was my fault. So I miss it .... yes of course I would have loved to have had children what woman wouldnt.

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I have NF 1 also as a result of mutation. No one in my family-both sides- has it. I have cousins in my family that married, and i would think if the NF was passed along the family line, it would have shown there. Never the less, I'm hopeful for a cure some day. I agree with Kimakamee- "I have NF- It doesn't have me". I continue to wait on the LORD, because what's impossible to men, it not impossible to Him.

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