Re: My Guardian column on limb-lengthening

[Guest guest]

Thanks for your contribution, Mr. Kennedy! I truly appreciate your input on

this national conversation we are having about this important population,

" Little People " . I read your book with fascination. It helped me immensely!

Question. In this recent article you state, as LPA officially/publicly does,

that Achondroplasia is the most common form of dwarfism. I believe the national

numbers posted were 30,000 in US. Correct me if I am wrong, but I do not think

I am. That is interesting to me, a woman who happens to have been born with a

condition called Syndrome, TS. It is responsible for my profound final

adult short stature of 4'5 " . I weigh approximately 85 pounds. My husband says,

happily, that I weigh the same I did the day he married me 20 years ago. The

average height of an adult, who's short stature has not been treated, is

approximately 4'8 " , or about 7 inches less than you would expect without the TS.

The incidence of TS is known to be about 1 in 2,000 live female births. There

are an estimated 75,000 of us in the US. (source. www.turnersyndrome.org )

Your writing has helped me, attending the national LPA conference in Michigan as

a young woman helped me. This " dwarfism " list helps me. I am profoundly short.

Caused by a very specific known condition. Why, may I ask, is TS not included

in the public numbers about dwarfism? I have maintained a LPA membership for

decades and bring my kids to the holiday meetings. I have held LPA meetings in

my home on several occasions.

I think what you and others, including LPA, meant to say is that Achondroplasia

is the most common form of inherited disproportionate short stature. (source.

http://www.geneclinics.org/profiles/achondroplasia/details.html ) That would be

wholly accurate.

Your thoughts,

Jennings

---- Original Message -----

From: Dan Kennedy

dwarfism list ; parentsoflittlepeople2 ;

parentsoflittlepeople ; adultlps

Sent: Tuesday, December 02, 2008 5:56 PM

Subject: My Guardian column on limb-lengthening

Hello, everyone --

You probably already know that the Washington Post Magazine this past Sunday

published a long, very well-done article on a teenage girl with dwarfism who

undergoes limb-lengthening. I write a weekly column for the Guardian, and I

decided to offer some further thoughts this week. Please have a look:

http://tinyurl.com/5q79yn

(Fred: I write for Guardian America, which is online-only, so no need to run

out and find a copy!)

Thanks,

Dan Kennedy

Author, " Little People "

http://www.littlepeoplethebook.com*

*

[Guest guest]

Great article Dan,

 

I am sure this will grow into another debate about limb lengthening.  I will say

though, today at work was my first time in the drive thru at the credit union.

It was a major concern of mine because the tubes are coming out of the ceiling

hanging down. I wasn't sure if even on a stool I could reach them.  Luckily

sitting on the high office chair and stepping on the stool I was able to get a

grip on the tube.  What made me mad though wasn't my height, " thinking, ugh, if

I was only taller! "   Instead I said to my boss, " what a stupid construction job

to have them hang that high! "  Wishing I was taller never entered my mind.   I

think it's all about a person's mindset.  If they think their life is miserable

being short,or if they can only see the ignorance in this world about their

hight and can only see the negative, then yes, they will have a miserable view

of their dwarfism or struggle.  I guess for me I wasn't raised to think poor me,

or if

I was only taller my life would be easier. I could say that for anything then;

if I was only richer, only skinnier, only knew 10 languages, only knew how to

......we can say that about anything. 

 

Honestly, show me someone that has been truly happy their whole life with no

self image issues?  Ask any teen how they view their body, or if they've been

made fun of?  Who is the person at fault, the one with the supposed flaw, or the

person making fun of others?  Instead of changing what others won't make fun of,

instead help those kids who feel the need to make fun of others.

 

I'm apart of this world just like everyone else, and everyone else needs to

realize there are people out there who are different.  I do think however it is

lipservice, society preaches that it's whats on the inside that counts, yet,

look at celebrities, magazines, etc. 

 

The only two things I would really really love to change is my weight (working

on that) and my arthritis. I can say that if I were to gain six inches, I'd

still have crappy joints, you can change my height, but I'm still a pseudo!  

I wish those limb lengthening doctors would work on the arthritis issue!  Heck,

for that matter, AIDS and cancers need a cure, something much more major then

gaining six inches.

 

-

[Guest guest]

That number (1 in 30,000) is correct and achondroplasia is the most

common type. You can check it out at the OIMM database at s

Hopkins: http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=100800.

If the 1 in 2,000 number is correct for 's (I'm not doubting the

website), that means about 150,000 U.S. women have it. Since it can

be treated with growth hormone, I guess many doctors do not consider a

form of dwarfism, although we certainly have members with 's

Syndrome. LPA does not make a distinction in terms of proportionate

or disproportionate short stature for the basis of membership,

however, medical experts might for terminology of dwarfism.

There are (to date) over 200 types of dwarfism or diseases that cause

dwarfing conditions. But I'm not sure what the total number (in terms

of population percentage) is. I think, all added together, it comes

to about 50,000 individuals in the U.S.

Bill

On Tue, Dec 2, 2008 at 4:12 PM, Jennings Family <Jennifam@...> wrote:

> Thanks for your contribution, Mr. Kennedy! I truly appreciate your input on

> this national conversation we are having about this important population,

> " Little People " . I read your book with fascination. It helped me immensely!

>

> Question. In this recent article you state, as LPA officially/publicly does,

> that Achondroplasia is the most common form of dwarfism. I believe the

> national numbers posted were 30,000 in US. Correct me if I am wrong, but I

> do not think I am. That is interesting to me, a woman who happens to have

> been born with a condition called Syndrome, TS. It is responsible for

> my profound final adult short stature of 4'5 " . I weigh approximately 85

> pounds. My husband says, happily, that I weigh the same I did the day he

> married me 20 years ago. The average height of an adult, who's short stature

> has not been treated, is approximately 4'8 " , or about 7 inches less than you

> would expect without the TS. The incidence of TS is known to be about 1 in

> 2,000 live female births. There are an estimated 75,000 of us in the US.

> (source. www.turnersyndrome.org )

>

> Your writing has helped me, attending the national LPA conference in

> Michigan as a young woman helped me. This " dwarfism " list helps me. I am

> profoundly short. Caused by a very specific known condition. Why, may I ask,

> is TS not included in the public numbers about dwarfism? I have maintained a

> LPA membership for decades and bring my kids to the holiday meetings. I have

> held LPA meetings in my home on several occasions.

>

> I think what you and others, including LPA, meant to say is that

> Achondroplasia is the most common form of inherited disproportionate short

> stature. (source.

> http://www.geneclinics.org/profiles/achondroplasia/details.html ) That would

> be wholly accurate.

>

> Your thoughts,

> Jennings

[Guest guest]

Great article, Dan, from an average sized parental perspective of a

dwarf daughter with much forethought, heart, concern and of course

this, that in a long run we as a people need to 'see' that those

outside the majority or even the majority of what is 'considered' to be

the norm, beautiful and/or preferred, our sight needs to be as diverse

as our own people. Thus, instead of making the diverse conform to what

the majority would like to see, the majority really needs to conform

their sight.

~grady

[Guest guest]

Great essay Dan. Thanks so much for sharing.

I'm posting a link to a Washington Post online chat with Caitlin, her mother,

and the reporter.

http://www.washingtonpost.com/wp-dyn/content/discussion/2008/11/24/DI20081124018\

18.html

At one point in the chat the mother makes a comment that she was terrified of

Caitlin falling from a stool--so I assume then that stools weren't used in the

house to help her gain some freedom and independence. I think if my mother had

coddled me to that point, I probably would have opted for the surgery too.

I was extremely disappointed that the article didn't show any photos of Dahlia.

(You can see my comment about that in the chat transcript.)

Cara

________________________________

From: " dwarfism " <dwarfism >

dwarfism

Sent: Wednesday, December 3, 2008 1:32:53 PM

Subject: Digest Number 4198

Dwarfism List

Dwarfism List

Messages In This Digest (11 Messages)

1a.

Re: Reminder Ch13 D4 From: Grady

2a.

Fan of Matt's get tattoo From: Grady

2b.

Fan of Matt's get tattoo From: Grady

3a.

My Guardian column on limb-lengthening From: Dan Kennedy

3b.

Re: My Guardian column on limb-lengthening From: irish_p_butter@...

3c.

Re: My Guardian column on limb-lengthening From: Jennings Family

3d.

Re: My Guardian column on limb-lengthening From: Bill Bradford

3e.

Re: My Guardian column on limb-lengthening From: Grady

4.

Little People book website From: Dan Kennedy

5.

Test from Cincinnati, Ohio From: smmas

6.

Here is an online broadcast of Caitlin's ELL surgery From: Grady View All

Topics | Create New Topic

Messages

1a.

Re: Reminder Ch13 D4

Posted by: " Grady " gradysir@... gradysir

Tue Dec 2, 2008 11:41 am (PST)

Don't forgot to hang up the Dwarf Mistletoe, it's the most potent out

of them all, no joke. Everyone will be kissing everyone! haha

Google, " dwarf mistletoe " , just as I have it here in quotes, if you

don't believe me!

Have fun:), wish I could be there, but then if I was you wouldn't need

the mistletoe.

grady, the 'hi and kiss' botanist {}

> Hey Folk's This Saturday!

>

> We welcome you and your family to a

>

> Holiday/Christmas Party!

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Messages in this topic (2)

2a.

Fan of Matt's get tattoo

Posted by: " Grady " gradysir@... gradysir

Tue Dec 2, 2008 12:10 pm (PST)

I was thinking of all the lp men on here that I'd want a tattoo on my

body, anywhere, and sorry my fellow male shorties I drew a blank!!!!!

Ewwwwwwww!!! !!!! NO THANKS!!!!!! !!! YOU COULDN " T PAY ME ENOUGH TO GET

ONE OF ANY OF YOU!!!!!!!!! !!!!!!!!! ! OK, maybe Bill or Fred. haha

JUST KIDDING, not even them!!!!!!!! !!!! And sorry, not to burst

anyone's hope of seeing their likeness on me, that's just me.

I like being my own canvas, not yours, thank you!!! haha

To each their own tho:).

And yessssss, I know I am a big time fan to many on here as well...

but brothers and sisters, both small and tall, save yer money

and don't waste it on the likeness of me on you!!!!

Remember me more in your dreams... OK? haha

http://www.oleantim esherald. com/articles/ 2008/11/22/ news/doc49277bfe 6b88

4704185569.txt

enjoy, grady:P

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Messages in this topic (2)

2b.

Fan of Matt's get tattoo

Posted by: " Grady " gradysir@... gradysir

Tue Dec 2, 2008 12:11 pm (PST)

I was thinking of all the lp men on here that I'd want a tattoo on my

body, anywhere, and sorry my fellow male shorties I drew a blank!!!!!

Ewwwwwwww!!! !!!! NO THANKS!!!!!! !!! YOU COULDN " T PAY ME ENOUGH TO GET

ONE OF ANY OF YOU!!!!!!!!! !!!!!!!!! ! OK, maybe Bill or Fred. haha

JUST KIDDING, not even them!!!!!!!! !!!! And sorry, not to burst

anyone's hope of seeing their likeness on me, that's just me.

I like being my own canvas, not yours, thank you!!! haha

To each their own tho:).

And yessssss, I know I am a big time fan to many on here as well...

but brothers and sisters, both small and tall, save yer money

and don't waste it on the likeness of me on you!!!!

Remember me more in your dreams... OK? haha

http://www.oleantim esherald. com/articles/ 2008/11/22/ news/doc49277bfe 6b88

4704185569.txt

enjoy, grady:P

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Messages in this topic (2)

3a.

My Guardian column on limb-lengthening

Posted by: " Dan Kennedy " dkennedy56@... dk56

Tue Dec 2, 2008 2:56 pm (PST)

Hello, everyone --

You probably already know that the Washington Post Magazine this past Sunday

published a long, very well-done article on a teenage girl with dwarfism who

undergoes limb-lengthening. I write a weekly column for the Guardian, and I

decided to offer some further thoughts this week. Please have a look:

http://tinyurl. com/5q79yn

(Fred: I write for Guardian America, which is online-only, so no need to run

out and find a copy!)

Thanks,

Dan Kennedy

Author, " Little People "

http://www.littlepe oplethebook. com*

*

[Guest guest]

Yes, I agree too:)

>Great essay Dan. Thanks so much for sharing.

The one thing that got on your article was not you or what you said,

I wanted to tell off 'Bill The Plasterer' guy in the comment section

sooooooooo bad, haha, but out of respect for you and since it is your

column, not mine, I refrained!

Notice how he spelled, Favour, and he says he's not British amongst

other errors and unfounded accusations he said of you!

~grady

[Guest guest]

Hi folks,

I was ambivalent about participating in this thread, but since it's

going so well I'll throw in my 5 cents.

I walked in Caitlin's shoes in the sense of having a life at that age

which had no dwarf influence, other than my own experiences. (Mind you

I am 52 and those were different times when we still had dinasours

walking around.) I strongly suspect (or know in moments of

introspection) that if I had been given the option offered to her I

would have made a similar choice and for similar reasons. Although I

lived in a household and was part of a family that was way too

conscious of the physical (imagine living w/3 beauticians), I'm not

sure it was about the physical 'beautification' change associated with

the increase in height. Perhaps that's because the physical aspects of

my dwarfism are more evident than Caitlin's. Or at least to me they

seem so, comparing what I looked like at that age, to her pictures. I

also for the most part would have also appreciated the freedom that a

few more inches gave me and even more as I age and become less stool

secure. We did have a stool or 2 in the house and at that point that

was all I needed. And many a times heard the " be careful there "

warning from adults. We won't talk about climbing on other less secure

items like high chairs with wheels! A few accomodations were made for

me in school, but honestly not until my freshman year in college and

for a photography class involving darkroom work. Maybe more could have

been done, but I was resistant and chose to go with minimum

intervention (and dangerous high chairs). Now I can see that I wanted

to blend in as much as possible. As if we can hide the dwarfism or we

ever blend in climbing on precarious furniture.

It is unfortunate that the decision for such great change has to be

made at such a young age. Bottom line, the 'now or never' window of

opportunity is rather small and exacerbates the situation. Even now at

52 I hate when I find myself pushed up against a hard wall and have to

weigh out the consequences of a life altering decision. One lives life

at that age in a situation where it's all about the mirror and

perception, whereas at the age of 52 I've learned to look at it from

the inside out. And yet, I find myself having moments now, as I age

and the disability affects my mobility even more, where I'd sacrifice

enormously to change that which I know cannot be changed. I'm calling

this my 'mid-life crisis', no cute expensive car involved!

I will say that I am astounded that her parents, in this day and age

of Internet access, did not make more of an effort to expose

themselves to the 'community' and at least let Caitlin see other

possibilities or solutions. For that (in my humble opinion) they

should have made time and effort. As we all know it is difficult being

different and expecially at an age when we want to blend in. And it

helps enormously to see that there are others like us who may also

struggle to adapt, but do none the less.

And I was more appaled at the doctor's insistance of follow-up surgery

for her arms. Or at least to me it seemed that he was more insistant

that the mother. I am glad that Caitlin chose to discontinue further

enhancements and also that she is doing so well with the outcome of

the surgery she did have. Hopefully this is a story with a good ending

and it does give her what she needed; whatever that may turn out to

be. Everyone has their own threshold for inner strength and hopefully

we find our own way of coping without being judged too much by the

'community' we will always belong to, if not join.

Interesting discussion folks,

=====post below edited to include only relevant information, for space

purposes ================

At one point in the chat the mother makes a comment that she was

terrified of Caitlin falling from a stool--so I assume then that

stools weren't used in the house to help her gain some freedom and

independence. I think if my mother had coddled me to that point, I

probably would have opted for the surgery too.

>

> I was extremely disappointed that the article didn't show any photos

of Dahlia. (You can see my comment about that in the chat transcript.)

>

> Cara

[Guest guest]

I'm late in joining this discussion, but feel there are a few things

I needed to add. Most people participating are long familiar with my

story and Dan mentions it briefly. I am the first LP in North

America to complete all three stages of ELL for dwarfism and gained

almost a foot. I started this procedure in 1988 so this past June

marked twenty years and finished in 1992 so my completed results are

over 15 years old. To date I have no problems. I lead a very active

and busy life. That's a very quick synopsis.

Two things I wanted to mention though. First I know of no one who

has died from this procedure. I know Dr. Ain likes to say it can

happen, and it can with any surgery, but to my knowledge, that has

never happened with Dr. Paley.

Second, most (all?) of the LPs who undergo ELL are not trying

to " fix " ourselves. Dan's right, we're not broken. Accordingly

there is nothing to fix. We're not raised to think there is

something wrong with us. I certainly was not. I chose to have this

procedure because I understood it would make my life functionally

easier.

ELL is a personal choice for each LP and thier family to make amongst

themselves. That's the bottom line. I must say I have found the

discussion about changing society interesting. I certainly don't

disagree with the idea. I think the most we can change society to

become more accepting and accommodating the better. And the same can

be said for LPA and ELL. Why are members not provided complete

information on ELL? Why has the LPA MAB not separated the wheat from

the chaff among surgeons so those LPs who do want this know where to

go. Over half the links on the website concerning ELL do not even

work and have not in a long time. LPs should be provided with as

much information as possible so they can make the most informed

decisions possible.

Just my two cents. As always, I'm happy to answer any questions.

Gillian.

>

> Hello, everyone --

>

> You probably already know that the Washington Post Magazine this

past Sunday

> published a long, very well-done article on a teenage girl with

dwarfism who

> undergoes limb-lengthening. I write a weekly column for the

Guardian, and I

> decided to offer some further thoughts this week. Please have a

look:

>

> http://tinyurl.com/5q79yn

>

> (Fred: I write for Guardian America, which is online-only, so no

need to run

> out and find a copy!)

>

> Thanks,

>

> Dan Kennedy

> Author, " Little People "

> http://www.littlepeoplethebook.com*

> *

>

>

>