Re: Quality of Life in Children With CMT

[Guest guest]

They needed to study this? Seems obvious. lol

In a message dated 8/29/2009 9:56:46 A.M. Pacific Daylight Time,

gfijig@... writes:

Overall, quality of life is negatively affected by the presence and

severity of Charcot-Marie-Overall, quality of life is n

[Guest guest]

I guess no real surprise in this study. Still I'm glad it was done and we have

it as a reference.

[Guest guest]

- My first reaction was a good chuckle too...however I guess the

researchers needed to make some kind of a comparison. They really didn't need

to study the kids though, they could've just asked the parents!

[Guest guest]

The last sentence is really annoying: " Overall, quality of life is negatively

affected by the presence and severity of Charcot-Marie- Tooth disease in

childhood. " I mean, isn't that obvious? Like asking a person who broke his leg

and wears a plaster if life is better now? Anything that limits mobility and

causes pain is negative. But then, a child without CMT can have a negative

effect on his quality of life too (he could be below avarege in intelligence,

have an abusive parent, have severe asthma etc.), so the study only states that

compared to an OPTIMAL childhood, having CMT is a bit worse. And that is

obvious. No need to study that. Please use the money to tell us something we

DON'T know!

Beata 

[Guest guest]

In a message dated 8/31/2009 9:08:36 A.M. Pacific Daylight Time,

beataboo@... writes:

Please use the money to tell us something we DON'T know!

Beata

I hear that!

[Guest guest]

I agree. Also, it's annoying when researchers interview non-disabled people (in

this case, the parents), asking them basically to put a value on the disabled

person's life. Perhaps we need to create a whole new category of disabled

individuals, called 'parents of a disabled child', because it seems they always

think they know more about the disease than the ones living it. We call them

'wanna-bees'.

>

> The last sentence is really annoying: " Overall, quality of life is negatively

affected by the presence and severity of Charcot-Marie- Tooth disease in

childhood. " I mean, isn't that obvious? Like asking a person who broke his leg

and wears a plaster if life is better now? Anything that limits mobility and

causes pain is negative. But then, a child without CMT can have a negative

effect on his quality of life too (he could be below avarege in intelligence,

have an abusive parent, have severe asthma etc.), so the study only states that

compared to an OPTIMAL childhood, having CMT is a bit worse. And that is

obvious. No need to study that. Please use the money to tell us something we

DON'T know!

>

> Beata 

>

[Guest guest]

Studies like this are of value, even though the results may seem obvious.

 

For example, when parents are discussing accomondations with school officials

who think their child is perfectly capable of doing things the other kids do, it

may be of value to have scientific proof in their hands proving otherwise.

 

More importantly, in order to obtain research funding or get charitable

donations, the consequences of a disease need to be established by a trustworthy

source.

 

The complaints of a parent just don't have the same impact.

 

 

[Guest guest]

Yes they did because that is there Job to study kids who has CMT.The parents are

not medical Doctors nor experts with CMT.

> - My first reaction was a good chuckle too...however I guess the

researchers needed to make some kind of a comparison. They really didn't need

to study the kids though, they could've just asked the parents!

>

>

>