[tri-wings] Re: hospital education re trisomy ??? -sorry longer

>Another thing everyone on this list can do is to enroll in the TRIS  study if 
>you do 
>not know what that is, email me and I can send you the  information.  The more 
>information that the medical community has about the realities of life for 
>children 
>with T13 and T18 the better their lives will become.  My personal goal has 
>been to 
>raise money for more research for t13  and t18.  Together, me and my husband, 
>along with some other friends we have  met along the way, have raised just 
>over 
>$34,000.00 towards research, during two events. One of the things that we 
>helped 
>to fund, and we plan to  continue to fund, is the TRIS project. 

Thanks for the plug Bess :)

We've just started the pilot phase, but I don't see any problem with adding more
participants at this time.  In fact, we really do need more angel families, 
especially
T18's, because Dr Carey specifically wants to know what their long term survival
rate is.  He says he can't compute the odds of long term survivors developing 
Wilm's tumors, until he he knows approximately how many do survive long term.
And we can't determine that without imput for the angels.  Right now we have 
approximately 60 families participating (combined 13 & 18, full, mosaic & 
partial, 
living and deceased).  

Also along the line of this thread though I wanted to mention on this list that 
I
just spent the weekend running the SOFT, USA exhibit booth at an American
College of Medical Genetics Conference.  Most of my visitors were genetic 
counsellors and other MD's.  And one of the main things that I stressed to them 
was following up with the families to see how the children are doing.  If they 
just 
diagnose and then forget about them, we'll never get anywhere with the 
education 
of these doctors.  How can they know there are survivors, if they don't know of 
any?  

And the other thing I stressed was referring their patients to the various 
support 
groups available....SOFT, Unique, CDO, the Trisomy On-line lists, Living With 
Trisomy 
13, etc.  It's not like there's really a shortage of available support out 
here.  Many
assured me that they do, but one HMO group in particular told me that wasn't 
necessary, that they had a local family who's child died that they prefer to 
refer to.
And with what I already knew of the substandard care THEY give to even "normal"
births, that didn't surprise me a bit.  Some doctors and hospitals just aren't 
going
to come around to our way of thinking anytime soon.  

But I was also accosted by a little fireball of a fetal genetics MD who said he 
wants 
to be John Carey when he grows up.  This is another genetics doctor who like 
John
wants to see the TRIS Project goals met.  And like John he routinely advocates 
for 
heart and other surgery for our kids.  So we ARE getting somewhere, dispite the 
appearance sometimes that we're not.  Any way, file this guy away in your 
memory 
bank for potential future reference, Dr Robert Hopkin, Cincinnati Children's 
Hospital.


Fawna, mom to Philina 23 yrs (PT6p & Moya Moya Syndrome)
Research Coordinator: Tracking Rare Incidence Syndromes 
(TRIS) project - We are currently enrolling all varieties of 
Trisomy 13 & 18, living & deceased, for the pilot phase.  
To include your child's data and help update the medical 
literature please see: http://web.coehs.siu.edu/Grants/TRIS/
And to add a link for your Trisomy child's personal web page 
please see: http://www.livingwithtrisomy.org/
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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