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by Exodus
Thu Feb 15, 2018 8:18 pm
Forum: Our Stories
Topic: Newbie INTRO - Exodus 2/12/2018
Replies: 15
Views: 3244

Re: Newbie INTRO - Exodus 2/12/2018

Dear Exodus, As a P.S., I would guess neurofibromatosis, which I've encountered a few times in my career. I'm guessing that whatever the cause, you've discovered the resources of NORD or similar organizations. I know of several parents for whom groups for parents of rare disorders and/or congenital...
by Exodus
Wed Feb 14, 2018 9:21 pm
Forum: Our Stories
Topic: Newbie INTRO - Exodus 2/12/2018
Replies: 15
Views: 3244

Re: Newbie INTRO - Exodus 2/12/2018

Hi Searcher . . . thanks so very much for your post – sorry it’s taking me so long to answer. I was impressed with what you wrote about "40% of eventual dementia being attributable to NON-genetic factors" . . . Is that info in the twin study link you sent? I saw the abstract, but haven’t h...
by Exodus
Wed Feb 14, 2018 9:11 pm
Forum: Our Stories
Topic: Newbie INTRO - Exodus 2/12/2018
Replies: 15
Views: 3244

Re: Newbie INTRO - Exodus 2/12/2018

WOW NF52 – somebody who speaks ADA – thanks so very much for your encouraging/affirming post. And yes – we are very familiar with the systems and resources available for ID/DD folks in our state. It is a long fought for resource that has been providing and paying for the “staff” I spoke about in my ...
by Exodus
Tue Feb 13, 2018 12:37 pm
Forum: Our Stories
Topic: Newbie INTRO - Exodus 2/12/2018
Replies: 15
Views: 3244

Re: Newbie INTRO - Exodus 2/12/2018

Thanks Sooooo very much to everyone for the speedy responses and welcomes...I'm on duty today and some of tomorrow, but will respond asap...haven't figured out how the PMs work on this list...is there a tutorial, etc.? Later...Exodus
by Exodus
Mon Feb 12, 2018 5:53 pm
Forum: Our Stories
Topic: Newbie INTRO - Exodus 2/12/2018
Replies: 15
Views: 3244

Re: Newbie INTRO - Exodus 2/12/2018

Thanks, Susan! I do know I do not have the MTHFR mutation, but have high homocysteine, so working on that presently!
After my first visit to the Primer, I realized I needed to print out the 6 page glossary - now that I have it, I'll return ;-)
by Exodus
Mon Feb 12, 2018 5:10 pm
Forum: Our Stories
Topic: Newbie INTRO - Exodus 2/12/2018
Replies: 15
Views: 3244

Newbie INTRO - Exodus 2/12/2018

Greetings to everyone – Exodus, here! Wanted to introduce myself, but mostly just send a huge thank you to ALL of you for your transparency and candor and most of all for this treasure trove of information – no words are adequate, really, for my gratitude!!! I am a retired healthcare professional – ...

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