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Medical Forum / Diseases and Disorders / Epilepsy / December 2004

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Gene Discovery Project

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Anna LeBlanc - 27 Dec 2004 19:42 GMT
Some time ago I posted a family tree on the Epilepsy Foundation's Gene
Discovery Project site. I did this because my two sons have seizure disorder
and none of the neurologists they've seen believe they have the form which
tends to run in families, whatever that is.

http://www.epilepsyfoundation.org/research/genediscovery/index.cfm

Has anyone here submitted a family tree, and subsequently been selected by
researchers to participate in a study?

Anna
G.Ross - 28 Dec 2004 04:32 GMT
> Some time ago I posted a family tree on the Epilepsy Foundation's Gene
> Discovery Project site. I did this because my two sons have seizure
[quoted text clipped - 7 lines]
> researchers to participate in a study?
> Anna

 We had a woman 'here' 6 years ago, who Dave might remember who had an
Aunt, and ?? -- another relative, who had Epilepsy as well as herself.
  I don't remember which seizure *type Darla had (Dave again might know),
but many Medications didn't control her's, and she had had them from
childhood up to whatever age she was 'here'  (I'd guess in her 20s or so).
 I don't think she had been on a study like that at the time or she would
have mentioned it-> (I had posted that I'd never met anyone who had a
Relative who also had seizures -- and she replied with 'Welcome to my World'
and we had a 3-4 day Good Discussion about what it was like (for her) to be
diagnosed as a Child, go to School and Grow up with uncontrolled seizures to
the age she was at the time.)
   I had written her once about 'AD2000', since she hadn't posted for a
long time, to make sure she was 'O.K.'  and she seemed quite excited that
someone would keep her older posts and want to know how she was.   And I
Did.
  (That was my Win.95/computer no.1, so if I get it back from my Son and
the Disk wasn't cleaned and compressed, her www (to me) might still be
there.  I might also have a printout whose ink hasn't faded from then (for
me again), but I expect if she were still active or registered *here, that
she would have posted at least from time to time over the last ~5 years.)
G./

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