Author Topic: Heredity and NF2  (Read 4008 times)

Dealy

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Heredity and NF2
« on: October 26, 2006, 02:36:00 pm »
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.

tony

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Re: Heredity and NF2
« Reply #1 on: October 27, 2006, 12:54:25 am »
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

Timjk

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Re: Heredity and NF2
« Reply #2 on: February 05, 2007, 04:20:43 pm »
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
Surgery Feb.7th at Moffitt,Tampa. Removed right side AN 3.3 CM plus Chiari Malformation decompression.Second surgery Feb.23rd Ventricle Periphirial Shunt to correct CSF leak.. NO HEARING LOSS.. NO HEADACHES... GOD IS GOOD !!!

 


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