[tri-med] Re: doctors

On 1/26/06 4:15 AM, "jwaite" <jwaite@xxxxxxxxxxxxx> wrote:

> While you gather information, statistics, suggestions etc to share with h=
er
> doctors you will become a leader. Once they figure out you know what you =
are
> talking about they may follow you, taking your guidance and look how they
> may grow!

A recap for the (newer) families---

The Doctors are briefly taught about trisomy etc...in medical school...and
many only saw one throughout their training if even that.....

They HAVE to go back and read up on these kids ( which isnt' too
positive)....re-educating themselves on the medical abnormalites, treatment=
s
and expectations with this trisomy syndrome(s).

With the internet...more parents are becoming better Advocates and we are
seeing the "TRIUMPH of LIFE" in many of our kids.

It is our families, with the help of message boards like this--- who are
encouraging their Doctors to go the extra mile...so we are seeing more
survivors and with the internet, we can share them...

I encourage all of you to post your story and or link with Fawna...
http://ww.livingwithtrisomy.org

It would be wonderful to get all the numbers filled in here...
Trisomy 1
Trisomy 2 =A0(1 link)
Trisomy 3 =A0(1 link)
Trisomy 4=A0 (1 link)
Trisomy 5=A0 (1 link)
Trisomy 6=A0 (1 link)
Trisomy 7
Trisomy 8 (1 link)
Trisomy 9 =A0=A0(3 links)
Trisomy 10 (1 link)
Trisomy 11 (1 link)
Trisomy 12 (1 link)
Trisomy 13=A0(9 links)
Trisomy 14 (1 link)
Trisomy 15
Trisomy 16 (1 link)
Trisomy 17=A0=A0(1 link)
Trisomy 18 (13 links)
Trisomy 19
Trisomy 20
Trisomy 21
Trisomy 22 (1 link)

So often in those early years.... I would go to the computer and punch in

Living trisomy 13 or  trisomy 13 survivors....

Just those key words along with your trisomy (number) will get you to the
living pages......


and also add to the data base of
TRIS  Tracking Rare Incidense  Syndromes
http://web.coehs.siu.edu/Grants/TRIS/

Hope you don't mind the plug Fawna!!!
ThereseAnn
Mom to Natalia t 13 5 yrs
Www.pray4natalia.com
http://www.livingwithrisomy13.org

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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