Re: Hip Dysplasia in CHARGErs??/How come I havent met other races of CHARGERs??

December 2, 2004

Chip,

CHARGE can happen to any family in any country. There have been people from

many countries who post here every now and then with a question, but

sometimes it is hard to stay active if English is not your first language.

So people with other languages might chat on-line with people who write in

their most comfortable language. I would say access to English 1st, and

access to a computer and internet 2nd, as 2 big reasons why you may " meet "

the people you noted on-line and not others.

As far as hips I am no help.

Kim L

>

> Hey ya'll,

> I got 2 questions which are are like 2 different topics that I'm

> curious about. So, I thought I'll make it 1 big posty letter,

> instead of sending 2 little ones, right?

> Uumm...somehow before, I heard from somewhere probably from some

> CHARGE websites, friends, that some CHARGERs tend to have some kinds

> of Hip Dysplasia? Like as if some kind of arthritis that are found

> in old people and young people with ost....bleah, can't spell it

> right, and with RH....Artitis, right? What are those? Is it common

> or rare in Charge Syndrome? Is it related to balancing problems?

> Cuz, I know I got some balanceing problems, and don't think it's the

> hip, is it? Probably my hearing loss, right?

> Oh Yeah, for the pat 6 yrs since I joined the CHARGE Group, I met

> Chargers and thier parents from different states, and some

> countries. And I remembered, that some websites that CHARGE Syndrome

> are found in all races, which means there are asian, mexican, black,

> and other races, right? But, I only met online and in person are:

> arabic charger, australian, half japanese, canadian, british, and

> mostly american CHARGErs, right? How come there isn't any other

> races of CHARGErs?? Like black, hispanic, asian, and all others, for

> example? I'm just curious, cuz I haven't met a fully black,

> hispanic, or asian CHARGErs before. Well, is half japenese,

> Chantelle is Canadian, and Belinda is Australian, so that's a start,

> right? Maybe you guys know some websites about other CHARGErs from

> different countries, are there any websites of other Chargers??

> Anway, type back soon. Thanks, take care!

> Ol' Chipper

>

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> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

December 3, 2004

Hi Chip,

On question 2, our daughter is mixed race (or biracial or dual heritage

depending on your pc position). She is of African/White British heritage.

We have also met a totally Black family with a child with CHARGE. I do not

think there is any higher an incidence of CHARGE in any particular

race(although I will stand corrected if anyone knows better. I think Kim is

right and language and communication play a part in who we meet on the

listserve. Another factor to consider is that in some countries with less

medically advanced practises or equipment, the children may die at birth so

go undiagnsoed (consider choanal atresia or heart problems etc). In the UK,

USA, Australia, Canada etc, I am sure several children are undiagnosed

because the medics are not familiar with CHARGE. This would be compounded

by disadvantage in medical developments etc in developing countries.

Flo

December 9, 2004

I have " loose " hips, i donno if its got to do with charge, but they go

utwards more then my knees so now i have patello syndrome whatever its

called..

Belinda

Hip Dysplasia in CHARGErs??/How come I havent met other

races of CHARGERs??