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Does anyone have NF or have a child with NF?
Just wondering.
If you have NF, does your child have NF too? I have two DD's that so far show no symtoms of NF, but will be on the radar for the next few years.
Michelle
Mommy to Kayleigh, Audrey and Faith.
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Re: Does anyone have NF or have a child with NF?
Neurofibromitosis.
It is the most common genetic condition in humans. Many people don't know they have it. My DH was not diagnosed until he was 25.
William would not have a diagnosis yet based solely on his cafe au lait spots, etc, but we did the genetic testing and theyw ere able to get DH's gene info, so we could test William, and he does have it.
We will have baby #2 tested (probably in utero, if not at birth) as well. Mostly because i like to have all the data!
There have been at least 2 other NF moms on here in the past... I am not sure how regular they are.
I have NF. My daughter does not have NF as far as we know, she is a PGD baby, but we never confirmed with CVS/amnio. She has no signs and is almost 2. We are trying for #2 with IVF/PGD but having BAD luck so far
We may roll the dice naturally when we close the book on this PGD business. We shall see.
DD #1 born 9/07 ** DD #2 born 7/11 ** Operation Take Back My Body has begun 10/11
Upcoming Races
Gobble Wobble 5K 11/24/11 - Abington, PA 29:40
Superbowl 10K 02/05/12 - Allentown, PA 54:28 PR!!!!
Broad Street 10 Mile Run 05/06/12 - Philadelphia, PA 1:30:44
Rock and Roll Half Marathon 09/16/12 - Philadelphia, PA
Philadelphia (Half?!?) Marathon 11/18/12 - Philadelphia, PA
Suzy, does William have any of the typical signs? Cafe au laits or freckling? I keep a look out for the spots even though we did the PGD. I know quite a few mom's who had misdiagnoses (not for NF).
I see his b-day is right around my daughters (she is 9.21.07)
DD #1 born 9/07 ** DD #2 born 7/11 ** Operation Take Back My Body has begun 10/11
Upcoming Races
Gobble Wobble 5K 11/24/11 - Abington, PA 29:40
Superbowl 10K 02/05/12 - Allentown, PA 54:28 PR!!!!
Broad Street 10 Mile Run 05/06/12 - Philadelphia, PA 1:30:44
Rock and Roll Half Marathon 09/16/12 - Philadelphia, PA
Philadelphia (Half?!?) Marathon 11/18/12 - Philadelphia, PA
Are they visible under a Woods lamp or by the naked eye? CALs are my most obvious NF symptom. I have one larger tumor on my ankle, which I'd eventually like to get removed, but other than that, multiple CALs are the only visible thing. Mine are fairly obvious, and I am wondering if DD had them, would I be able to see them w/o the lamp. She is pretty fair-skinned. That is great he only has a few. Hopefully he'll continue to be mild.
DD #1 born 9/07 ** DD #2 born 7/11 ** Operation Take Back My Body has begun 10/11
Upcoming Races
Gobble Wobble 5K 11/24/11 - Abington, PA 29:40
Superbowl 10K 02/05/12 - Allentown, PA 54:28 PR!!!!
Broad Street 10 Mile Run 05/06/12 - Philadelphia, PA 1:30:44
Rock and Roll Half Marathon 09/16/12 - Philadelphia, PA
Philadelphia (Half?!?) Marathon 11/18/12 - Philadelphia, PA
DH's CAL's have never been checked with a Wood's lamp, they are all visible.
DS has five, and a few of thema re barely visible without the naked eye, but if you know where they are you can find them.
DH has quite a few tumors. He has had 2 removed- a huge one (tennis ball) in his neck, which was a fairly major surgery, and a annoying cosmetic one on his arm, because it got in the way and got caught on stuff.