Re: explaining CHARGE to others

[Guest guest]

Ha,ha Michele-

Nope. Not a filbert in the bunch. lol.

in a message dated 5/8/2007 6:33:27 PM Eastern Daylight Time,

momonamission@... writes:

It's very hard to explain in a nutshell. I guess maybe a coconut would be

ok. But certainly not a filbert.

;-)

in Ma.

************************************** See what's free at http://www.aol.com.

[Guest guest]

I usually say it's a rare syndrome. That they found the affected gene to be

one that regulates what all the others do - so it affects nearly every

system. Then I say Aubrie has hearing and vision impairment, motor and

speech issues, submucous cleft palate, had feeding issues as a baby, balance

and sensory issues, blah blah blah. Then they get a brief picture of her

and also know that it's complicated. I also add that she is lucky to have

many things affected but all relatively mildly so they understand that

CHARGE is a spectrum type syndrome which can affect each person quite

differently.

It's very hard to explain in a nutshell. I guess maybe a coconut would be

ok. But certainly not a filbert.

Michele W

Aubrie's mom

[Guest guest]

Ok, I reread that and it doesn't make any sense. let me try it again...

When I start to explain what the letters stand for then it promps more

questions because people don't know coloboma atresia and all of the other

medical words. Is there a simpler answer that anyone gives when aproached

in public situations?

Thanks,

>

> HELP!I am sure that you all have the common question " What is CHARGE

> syndrome, I have never heard of it? " If I start to explain C for

> coloboma etc then they question Coloboma atresia etc. I would like to

> know how you all answer the question? I would like to give enough

> detail rather than a genetic syndrome. Something that I can use with

> everyone would be great.

>

> Thanks,

> , mom to (11), Dylan(4), (20 months CHARGE)and Drew (2

> months).

>

>

>

[Guest guest]

Thank you . that sounds pretty good. IT is a complicated syndrome

and my is still young so I don't have the answer down yet. I like the

way you explain Aubries specific conditions and turn it positive yet still

explain that it is a spectum. Sums it up pretty nicely. I still would love

to hear feedback from others too if anyone else has ideas.

I do want to mention that very early on when I was still trying to grasp my

sons condition and I would be in a room with other parents of " special needs

" children and they would have a simple answer about their childs situation

like " my son has speech delay " or " down syndrome " and then I would come up

with this long list of things that were going on this parent approached me

after a conference and introduced herself and said " I like to think of my

child (whos issues were also complicated) as her DELUXE PACKAGE. I thought

that was so cute!

Anyway, Thanks to all for your help. In advance!

>

> I usually say it's a rare syndrome. That they found the affected gene to

> be

> one that regulates what all the others do - so it affects nearly every

> system. Then I say Aubrie has hearing and vision impairment, motor and

> speech issues, submucous cleft palate, had feeding issues as a baby,

> balance

> and sensory issues, blah blah blah. Then they get a brief picture of her

> and also know that it's complicated. I also add that she is lucky to have

> many things affected but all relatively mildly so they understand that

> CHARGE is a spectrum type syndrome which can affect each person quite

> differently.

>

> It's very hard to explain in a nutshell. I guess maybe a coconut would be

> ok. But certainly not a filbert.

>

> Michele W

> Aubrie's mom

>

>

[Guest guest]

-

The Deluxe Package is cute. You know, Down syndrome has many ways of

affecting a person, but folks don't go into all that detail. Just giving

the name is enough because it's so common. But with CHARGE, no one has a

clue. Most people don't even realize what a syndrome is. For us, because

people don't know CHARGE, we get the opportunity to have them know our child

- without making assumptions based on what they think they already know.

For example, tell a person your child has Down syndrome or Autism and they

don't ask for more info because they think they have enough of a handle on

it. But in reality they really don't know anything for sure about your

child. This is especially true for professionals. A teacher will think

they know how to teach all kids with Down syndrome, Autism, whatever based

on the label. But I've never met a professional who thought they knew

exactly how to manage Aubrie based on the CHARGE label.

I also look forward to hearing what others say.

Michele W

[Guest guest]

-

I like the DELUXE Package!! I often wonder the same, too. How do you

respond? People talk to Rasha and she doesn't even act like they're

there. If I go into too much detail I get the pity looks and I feel

like I've cheated her. As if they don't expect anything from her now

when I think she's pretty incredible.

Janay

Mom to Rasha (21 months)

> >

> > I usually say it's a rare syndrome. That they found the

affected gene to

> > be

> > one that regulates what all the others do - so it affects nearly

every

> > system. Then I say Aubrie has hearing and vision impairment,

motor and

> > speech issues, submucous cleft palate, had feeding issues as a

baby,

> > balance

> > and sensory issues, blah blah blah. Then they get a brief

picture of her

> > and also know that it's complicated. I also add that she is

lucky to have

> > many things affected but all relatively mildly so they

understand that

> > CHARGE is a spectrum type syndrome which can affect each person

quite

> > differently.

> >

> > It's very hard to explain in a nutshell. I guess maybe a coconut

would be

> > ok. But certainly not a filbert.

> >

> > Michele W

> > Aubrie's mom

> >

> >

[Guest guest]

Hi ,

With most people I am pretty general. I just say that CHARGE is a genetic

syndrome that results in birth defects in many different organ (or body)

systems. Originally, the letters in CHARGE stood for the defects used to

diagnose the syndrome, but the criteria are different now. Usually, this is a

satisfying enough answer. But if they want to know more (and I feel like

telling them), then I will explain some of the specific things Evan has.

Sometimes I wish I had it printed out on a business card...it would definately

save some time!

(mom to Evan, 21 months)

erinsefcik esefcik@...> wrote:

HELP!I am sure that you all have the common question " What is CHARGE

syndrome, I have never heard of it? " If I start to explain C for

coloboma etc then they question Coloboma atresia etc. I would like to

know how you all answer the question? I would like to give enough

detail rather than a genetic syndrome. Something that I can use with

everyone would be great.

Thanks,

, mom to (11), Dylan(4), (20 months CHARGE)and Drew (2

months).

---------------------------------

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Yahoo! Autos.

[Guest guest]

i try tell them bout this list tell them come here LOL

>

> Hi ,

>

> With most people I am pretty general. I just say that CHARGE is a genetic

> syndrome that results in birth defects in many different organ (or body)

> systems. Originally, the letters in CHARGE stood for the defects used to

> diagnose the syndrome, but the criteria are different now. Usually, this is

> a satisfying enough answer. But if they want to know more (and I feel like

> telling them), then I will explain some of the specific things Evan has.

> Sometimes I wish I had it printed out on a business card...it would

> definately save some time!

>

> (mom to Evan, 21 months)

>

> erinsefcik esefcik@... > wrote:

> HELP!I am sure that you all have the common question " What is CHARGE

> syndrome, I have never heard of it? " If I start to explain C for

> coloboma etc then they question Coloboma atresia etc. I would like to

> know how you all answer the question? I would like to give enough

> detail rather than a genetic syndrome. Something that I can use with

> everyone would be great.

>

> Thanks,

> , mom to (11), Dylan(4), (20 months CHARGE)and Drew (2

> months).

>

> ---------------------------------

> Ahhh...imagining that irresistible " new car " smell?

> Check outnew cars at Yahoo! Autos.

>

>

[Guest guest]

I dont really tell people who are not in the medical field Eva has

colubomas I just tell them she has a vision loss, and then I add the

hearing loss, heart issues (I also tell them she has had 2 heart

surgeries one being open heart), one kidney, facial paralysis, feeding

issues, and I tell them how she is behind on her milestones. I dont go

to much into detail and most of the time that leaves them

speechless....LOL! I enjoy telling people about CHARGE it makes me

feel like I am teaching them something new.

Hugs and good luck hun,

Crystal, mom to (11), (4), and Eva (2 year old CHARGEr)

wife to Dan in Illinois

>

> HELP!I am sure that you all have the common question " What is CHARGE

> syndrome, I have never heard of it? " If I start to explain C for

> coloboma etc then they question Coloboma atresia etc. I would like

to

> know how you all answer the question? I would like to give enough

> detail rather than a genetic syndrome. Something that I can use

with

> everyone would be great.

>

> Thanks,

> , mom to (11), Dylan(4), (20 months CHARGE)and Drew

(2

> months).

>