ANA Discussion Forum
General Category => NF2 => Topic started by: Dealy on October 26, 2006, 02:36:00 pm
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I know there are a few of us on this group that are NF2's (because we are lucky I guess). Has anyone done any research into the hereditary factor of NF2. When I had my treatment this summer in Baltimore the doctors kept on asking me if anyone else has this diesease in my family-and were surprized when I said no-I know of no one but me in the family or relation. My wife and I never had children. I had read earlier on a AN line that offspring have a 50% chance of getting this. At our age-my wife and I will never Know. This has bugged me for some time. WHERE IN THE HECK DID I INHERIT THIS THING FROM. Thanks-Ron.
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Firstly very complex subject - you are talking degree level or more.
Yes about half of all NF2`s are "New" in as much as there is no family link
these are called "founders" its a fault in a gene that happened as cells were
dividing when the patient was just hours or weeks old.
This MAY mean you did not actually inherit -
The doctors are wise to research family links - only time and due
process will tell.
- there is also a genetic test process - it takes time - and only reliable (ish)
It maybe they can spot the problem in yr genes - if they can they do have
a point of reference for any further checks
Hence the advice to deal with specialists
Best regards
Tony
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I have a sister with NF2.. I was adopted at birth and found my birth family when I was 39 (13 years ago)... I was diagnosed with muscular dystrophy 10 years earlier.. a non-fatal type.. The comment was made when I met my family " Oh isn't that strange ?? Suzie has a disease that produces tumors and you have MD"
I don't even know if the actual term "Neurofibromatosis" was mentioned then.
So when I got the results of my MRI in November checking a sciatic nerve pain stating NF2 I almost fell out of my wheelchair... I have 3 large spinal tumors and bilateral AN's. So as far as being hereditary, I am one of those...
Tim