Re: What I noticed that wasen't add to the charastric of CHARGE in the webpage..

[Guest guest]

Hi Chip,

thanks for your input. The " About CHARGE " section of the new website

will be updated very soon - I sent Neal the info I wanted on there

last week, so it will happen as soon as he has a chance (remember this

is a very busy time of the yera for everyone). I can't remember if I

included everyting on your list. Probably not, but I know some of it

is on there. There will be some photos illustrating many of the

features, too.

If we include everyting on the website, it will be as long as the

Manual, which is 300 pages. We just can't do that. We're trying to

put some of the highlights on the website and make sure people know

they can get more info from the Foundation. The Managment Manual for

Parents is more comprehensive, but even at 300 pages, it doesn't cover

everything.

When it changes (when photos are up on that page of the site), send us

more feedback and let us know what is missing.

Meg

Meg Hefner MS

Genetic Counselor, St. Louis MO

>

> Hiya again,

> I guess I should of metion to this before when we 1st saw the

new, improve CHARGE Foundation Webpage. It got to do with 1 section

that talk about the common, not-so-common and rare conditions found in

CHARGE Syndrome. Cuz, I do know what me and some of my CHARGE friends

got, but it wasen't added to that section. So, I thought of reminding

you to add a few more things, alright? Thanks!

> Torticollis: It's like having a crooked head, hidden neck. I do

know that me and some of my CHARGE friends are like that. And of

course, a lack of muscle development is also common in CHARGE

Syndrome, right? Can you please add these 2 to the CHARGE

Characteristic next time?

> Watery eyes whenever you yawn a lot: I'm the only CHARGEr that

got this, and I tend to get red eyes from rubbing my eyes too much.

Whenever I start yawning, I get like these loose tears coming down

from my eyes, sigh! Sometime, people mistaken me for crying. I don't

know if any other CHARGEr got this, but can you please add this too?

> 1 more thing, weaker upper muscle tones (chest, back, arms,

stomach): Since that we get cold so easily, we got a lack of body fat

in our upper body. Our lower part (legs, thigh, all the way down to

our feet, lol), we don't get cold much, cuz we get more body fat down

here.

> Oh Yeah, another 1 more thing, sorry...(that you should add this

and above description): Lack of puberty, slow weight gain seem to be

very common too! Since I had been experincing this for a very long

time now, I look more like a teenager than an adult, sigh! Most of my

CHARGE friends are like this too. Can you please add this to the

characteristic group? Thanks!

> Okay, that's all for now. Sorry for letting you this late. I

just had to re-check the webpage a couple of times, and I noticed that

half of other rare symptoms/diagonosis weren't added. So, I had to let

you guys know that it needed to be added, alright? Thanks, have a nice

day!

> Chip

>

>

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