GMA, Dateline, etc - Re: Clubfoot/Ponseti method press kit

[Guest guest]

Not yet, but someday someone will.

> ,

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> After all of this, did anyone of them ever do a story on it? I

have never

> seen one. Did I miss it?

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> Mommy to 12/17/98

>

> and Christian 1/30/04

>

> _____

>

> From: Egbert [mailto:martinegbert@e...]

> Sent: Saturday, September 18, 2004 2:07 AM

> To: nosurgery4clubfoot

> Subject: GMA, Dateline, etc - Re:

Clubfoot/Ponseti

> method press kit

>

>

>

> From November 2000. This e-mail was sent to a number of national

> media groups. This was probably not the best way to try to

> encourage them to do something, but we tried and didn't know how

> else to get information to them. A number of other parents have

> also tried to contact them. We got e-mails back from one or two

of

> the groups.

>

> Good Morning America (also sent to Dateline, 60 Minutes and other

> news story type groups): (Other parents have sent articles to

them

> as well over the years. Many of the links in this story from

> November 2000 no longer work.)

>

> I am hoping that you might be interested in doing a story on what

> some might consider a medical miracle. It however appears to be a

> medical miracle that has been ignored for at least 40 years. It

has

> to do with the treatment of children born with clubfoot. This

birth

> defect occurs in approximately 1 in 750 births and affects about

> 5,000 newborns in the US per year (probably about 140,000 newborns

> per year worldwide).

>

> Since the 1950's, the standard treatment for children

> born with clubfoot was to try to manipulate and cast their feet

for

> a few months to see if the feet would straighten out. With

> traditional methods this is not usually successful and between 65-

> 95% of children would end up needing to have major ankle surgery

> before they are one year of age. Clubfoot surgery has been

> described as one of the most technically complicated of all

> orthopedic surgeries. And although it has been the prevailing

> method of treatment for clubfoot since the 1950's there are no

long

> term outcome studies that go beyond 16 years of age. Some feel

that

> the long term outcomes of surgical treatment include painful

> osteoarthritis as well as other potential risks and complications.

>

> Since about 1950, Dr. Ignacio Ponseti at the University of Iowa has

> developed a " non-surgical " method where 95% of children could be

> treated by a manipulation and casting method that took only 1 to

2.5

> months without requiring the surgery. This method is called the

> Ponseti " Non-Surgical " method and has had the longest positive

> outcome studies (about 40 years) of any method and yet only about

2-

> 3% of pediatric orthopedists have used it.

>

> I am one of a group of about 70 parents who have found out about

the

> Ponseti " Non-Surgical " method of treatment on the internet since

May

> of 1999. About 40 of us had been told by our prior pediatric

> orthopedic doctors that our child would have to have clubfoot

> surgery. To date, only one of the 40 children has actually really

> had to have the surgery. Each one of us have felt that our child

has

> been saved from a needless surgical procedure that has many

> potential risks and complications. We also feel that we have an

> obligation to try to find ways to advise other new parents of the

> relatively simple Ponseti " Non-Surgical " method. These parents

come

> from about 25 states in the US and 5 foreign countries.

>

> With this information now on the internet, parents have been able

to

> learn about this alternative and travel to where it is available.

> After successfully having their children treated " non-surgically "

by

> the Ponseti method, many parents have taken their children back to

> their original pediatric orthopedist to encourage them to learn

> about a successful " Non-Surgical " alternative.

>

> We hope that you find this story of an 86 year old Dr. Ignacio

> Ponseti finally seeing his dream of having more children treated

> without the risks of a major surgery worth your time. The

following

> web sites will give you information about the method and the

parents

> group who is trying to help other parents be aware that a

> proven " Non-Surgical " alternative exists.

>

> Dr. Ponseti's web site at the U of Iowa -

> http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Clubfeet.html

>

> Parents Testimonials concerning the method -

>

http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/PatientList.html

>

> Parents Support Web Site with links to Information -

> http://www.egroups.com/community/nosurgery4clubfoot

>

>

> I think that this story has several different interesting sides to

> it.

>

> 1. Dr. Ponseti has come out of retirement at age 86 to try one last

> time to get his " non-surgical " treatment method accepted.

> 2. He has utilized the internet to take his message directly to

> parents of children born with clubfoot.

> 3. Parents who have responded to his message and tried his method

are

> actively trying to tell other parents and spread the word. Parents

> have taken the results back to their original doctors.

> 4. Now the medical community, which has largely ignored the message

> for 40 plus years is beginning to listen and change.

> 5. About 50% of the parents on the internet are willing to change

> doctors to try this method before considering surgery.

>

> Thank you for considering this wonderful story.

>

> and Allyson Egbert and (3-17-99)

>

> martinegbert@e...

>

> http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Egbert.html

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