RE: BPES Additional Symptoms

[Guest guest]

---the geneticist and surgeon i see here in canada says they have

seen BPES in africa mostly and of course around the world quite a

bit and they told me when my son was younger that in their

experience the average person is exceptionally smarter and things

come alot easier, now i don't know if this is true or not but from

their research that is what they experienced... although they did

say that alot more individuals have hyperactive tendancies from just

being hyper to having ADD, but i think the poll thing is a great

idea to help us all find out some things...

tonikka and lynden

In blepharophimosis , " Micah Truman "

<micah_truman@y...> wrote:

> Dear All,

>

> I'm getting frustrated. I've started going through all the

materials

> online that I can, which outline the potential relationship between

> developmental delay and BPES. I have seen everything from no

mention of

> the correlation of the two whatsoever, all the way through to one

study

> which claimed 9 of 15 individuals with BPES suffered from mental

> retardation. Not exactly where how their patients were sourced,

but

> this sounds fairly off base to me.

>

> My conclusion is that is it distinctly possible that we as a group

> probably have more information at our fingertips than many of the

> researchers whose materials I am (trying to) read.

>

> I am going to put a quick poll together, listing out all the

various

> potential major features I have read that supposedly come with

BPES. If

> you can, please take the survey - an email invite should be to you

> shortly. Results will be posted next to the survey, and will

change as

> more people take it.

>

> I hope that this is of help as we all try to better understand

BPES, as

> well as how we all have manifested the condition.

>

> All the best,

>

> Micah

[Guest guest]

What would be interesting to compare after the results of the poll is if the tendency to have ADD, developmental delay, etc., is greater than the percentage of those in the general population. It might also be interesting to see how many with BPES are considereed "above average" or "gifted" (per Tonnikka's post)lyndenhunter <lyndenhunter@...> wrote:

---the geneticist and surgeon i see here in canada says they have seen BPES in africa mostly and of course around the world quite a bit and they told me when my son was younger that in their experience the average person is exceptionally smarter and things come alot easier, now i don't know if this is true or not but from their research that is what they experienced... although they did say that alot more individuals have hyperactive tendancies from just being hyper to having ADD, but i think the poll thing is a great idea to help us all find out some things...tonikka and lyndenIn blepharophimosis , "Micah Truman" <micah_truman@y...> wrote:> Dear All,> > I'm getting frustrated. I've started going through all the materials> online that I can, which outline the

potential relationship between> developmental delay and BPES. I have seen everything from no mention of> the correlation of the two whatsoever, all the way through to one study> which claimed 9 of 15 individuals with BPES suffered from mental> retardation. Not exactly where how their patients were sourced, but> this sounds fairly off base to me.> > My conclusion is that is it distinctly possible that we as a group> probably have more information at our fingertips than many of the> researchers whose materials I am (trying to) read.> > I am going to put a quick poll together, listing out all the various> potential major features I have read that supposedly come with BPES. If> you can, please take the survey - an email invite should be to you> shortly. Results will be posted next to the survey, and will change as> more

people take it. > > I hope that this is of help as we all try to better understand BPES, as> well as how we all have manifested the condition.> > All the best,> > Micah

[Guest guest]

hi

I would like to recommend that people read this article:

http://www.geneclinics.org/servlet/access?db=geneclinics & site=gt & id=8888891 & key=yvyThuThGZXK5 & gry= & fcn=y & fw=suti & filename=/profiles/bpes/index.html

Especially you might like to look at the section called "Differntial Diagnosis".

Shireen

[Guest guest]

Please visit my site at seville44@... re Ohdo Syndrome or

Ohdo Syndrome for further information re developmental

delays.

Seville

> hi

>

> I would like to recommend that people read this article:

>

> http://www.geneclinics.org/servlet/access?

db=geneclinics & site=gt & id=8888891 &

>

key=yvyThuThGZXK5 & gry= & fcn=y & fw=suti & filename=/profiles/bpes/index.ht

ml

>

> Especially you might like to look at the section

called " Differntial

> Diagnosis " .

>

> Shireen