ANA Discussion Forum

General Category => NF2 => Topic started by: cin605 on March 15, 2009, 12:14:20 pm

Title: NF2
Post by: cin605 on March 15, 2009, 12:14:20 pm
My cousin ...my fathers sisters daughter has nf2 does that increase the risk of me having it?
Title: Re: NF2
Post by: Jim Scott on March 15, 2009, 03:19:21 pm
Cin ~

As I understand it, NF2 is 50% genetic (half of all NF2 cases are attributable to genes) and you have to inherit it from a parent.  If you're worried, I believe genetic testing is available and could eliminate your concern - or serve to warn you.  Preferably the latter.

Jim
Title: Re: NF2
Post by: Cheryl R on March 15, 2009, 03:34:09 pm
How old is your cousin and how old when the NF2 was discovered?       I was 51 when mine was found after already having one AN surgery.         I know of no other relatives with any.      I had older parents (Dad was 53 when I was born).        I always wondered if that had any effect on me ending up with it.              My dad died when I was 21 and I don't think he had it as had diabetes and some possible older age symptoms but I really don't think it was NF2.       I wouldn't think you have to worry about getting it.              Did you tell your dr about it?   
I love the pic of your bearded dragon.     Malibu is the name,right?             My brother ion law still has theirs and saw it recently.    Has grown a bit.      No babysitting it this year that I know of. 
                                      Cheryl R
Title: Re: NF2
Post by: Raven on March 15, 2009, 04:55:07 pm
Jim is correct, genetic testing for NF2 is available but from all the research I've done on NF2 it is only 60% accurate. I was diagonosed a little over a year and a half ago at age 48. My dad passed away eight years ago at age 66 and my mother is stll alive with zero symptoms..........so who knows how I got it. Also people with NF2 get tumors on thier spine as well, after my first consultation with my Dr. he ordered an MRI of my spine, I got five small tumors on my spine but are a non issue at this time.

Hope this helps

John
Title: Re: NF2
Post by: tony on March 16, 2009, 01:53:01 am
Sorry for your troubles
The NF2 genetics thing is just a bit more complex
than the current search for dark matter
Its unlikely that both your father and his sister are NF2
- possible, but unlikely
(If you father was not - it could not link to you ?)
The first question is - do either of them have symptons of NF2 ?
If not, then the daughter maybe a "founder"
- ie there is no genetic link back through the parents
about 50% of all NF2s are "new ones"
(however, were she to have children it could be passed on, 50/50 chance)
That said all of the close living relatives
should have the test
Given the ages (40-50 ?), and no clear indication so far
it is unlikely that there are further links to it
- but only the test will confirm
The test results % accuracy is getting better these days
- more like 75-80% in recent years
Finally it would be prudent for you just to have a regular MRI
scan annually for a few years - for peace of mind ?
Within the clinic that the daughter attends
they should be commencing a genetic search ?
I wish you and all the close family well in this
- the good news is that the there are successful
ongoing trials for an NF2 drug
so it is getting better
Best Regards
Tony
Title: Re: NF2
Post by: cin605 on March 16, 2009, 03:28:45 pm
I do not think my father has it or any symptoms of it.My cousins was discovered when she was my age 42 she had 5 ANs in her
vestub.some on left some on the right.