Hi scott_jen_99, If your son with NF1 was a genetic mutation his children will have a 50% chance of passing it on....The rest of your children do not have a...
I would imagine that a genetic mutation is the way it starts in most families........going far back in the lineage.. ..once that mutation occurs that child can...
Let me clarify about my leg.......if a child has NF1 and their bones or leg looks funny (bowed) that is when they check for the Pseudoarthrosis........ ...
My son has the definite diagnosis of NF1 but he's never had any xrays??? The test they do on him every year are MRI's, genetics appts, kidney ultrasounds, and...
If your son is walking fine then you don't need to have him x-rayed. You would definitely be able to notice if his leg was bowed. In fact, sometimes at birth...
I actually misspoke in my other email.........if a child has a bowed bone at birth then they test for NF1.....I said it turned around........sorry about...
He was just having an MRI every 12 months, but they found a tumor on his optic nerve last Feb, so they are now being a lot more proactive. ... bowed. In fact,...
I was wondering. Did your son loose his eye sight from the tumor on the optic nerve. Back in 1961 my brother had one on the optic nerve. He was 6 & they didn't...
He hasn't yet that we know of. They are monitoring it really close though. THey said it if grows at all that we have to be sent to a neuro surgeon to see if...
My daughter is going through chemotherapy for an Optic Glioma on the Optic Nerve behind her right eye. She was diagnosed with NF when she was 6 months old. She...
Back in 1985, I had a tumor on small intenten the size of a grapfruit. I had to have 12 inches of my small intestine removed. My Dad had some isuses as well I...
Back in 1985, I had a tumor on small intenten the size of a grapfruit. I had to have 12 inches of my small intestine removed. My Dad had some isuses as well I...
First off let me Thank-you for accepting my add request. My name is Kimberly I am a 32yerar old female. I live in Indiana. I was diagnosed at birth with NF....
hi my name is alexis and i was diagnosed with nf1 back in 03 for the first time although i had symptoms a lot earlier. i have problems with my hands and leg...
hi there 30 yr old male.. diagnosed @ age 3....i have an (forgive the spelling errors here) optic glioma on the bridge of the optic ciasim...which is a tumor ...
Hi Alexis Im Tracey and I was told last year that I had NF1 it is now realised that is why I broke my leg due to pseudo arthrosis when I was 15 months old. I...
thank you so much tracey for replying now i don't feel so crazy these gp's make it seem as though everythign is in your head. i also get chronic joint pain...
Hi I'm a 51 yr old Female from TX.....with NF1, at the age of 18mos i broke my right leg...it never healed..had to wear a brace on it...then at the age of...
I know I am very sorry.....I meant to say Ladies and Gents....I know men/boys suffer just as much....it was an oversight on my part and I apologize for that ...
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Does anyone else have problems with excessive tiredness i'm trying to work out if it's conected to the NF or something else. I've had all the usuall blood...
... the ... Yes I suffer from the same, I can have a time where i will go to bed at about 9pm and not wake up till gone 10am and also a time where i wont goto...
I have been oeverly tired lately myself. Granted I do get up early but I crashed around 9 PM on the couch last night while watching TV and hubby woke me up to...
Hi Your sleep deprivation might be linked to stress, anxiety. Try to always sleep in a very cool room, do not eat meat for diner and do not take too much stuff...
People with NF1 tend to be self centered...... Speak for yourself and don't tar us all with the same brush while doing so. I am far from being self centered -...
My diet has hardly anything to do with it. I lost roughly 30-33 pounds and have kept it off (for the most part give or take a few pounds. I walk 2.5 miles a...
My daughter has been going through chemotherapy for a year for a Optic Glioma and as of right now the tumor is a bit smaller and swelling is down but it has...
Have the Dr.s Check Your Thyroid . It maybe under active I have a low active Thyroid, Can't realy say its NF related But I never have done any research. Id...
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