Re: COMPREHENSIBLE NUMBERS

[Guest guest]

I think also that when a surgeon says that they have done this surgery many times it might be a half truth. I had a surgeon tell me that she had never done a Heller's but she had done many to correct GERD and other surgeries in the local area of the Stomach/Eosphagus. So the surgeon might be very familiar with that part of the anatomy due to the numbers of surgeries in that area but might not have done many Heller's. I opted to go to a surgeon that has done several Heller's and had success in that part of the surgery. I did not feel to comfortable with having a surgeon that has never done a Heller's cut.

in Suffolk

[Guest guest]

A good estimate of the U.S. population is just under 300 million. Given that 1 in 100,000 supposedly have achalasia, then there would be a mere 3,000 people in the U.S. (or an incredibly low 60 people per state, assuming even distribution, which it can't be). Under this assumption, if a surgeon has told you he has performed thousands of Heller Myotomy's, chances are he's lying. (I'm just using the masculine gender of the surgeon here, but chances are a female surgeon wouldn't make that kind of claim).

Depending on how long he's been practicing.... I think Dr. Rice had done a couple hundred as of two years ago, and I think he does 1-2/week. I imagine that Dr. Patti's numbers are similarly high. Doing 100/year would only take ten years to have done thousands. However, I don't recall any surgeons claiming to have done thousands of Hellers.

With the hypotheses that there are many people running around who have achalasia but don't know it, and that the estimates have varied from 1 in 5,000, to 1 in 15,000, then let's split the difference and say that 1 in 10,000 have achalasia. Then 10 times the above numbers would be our new results. It would be 30,000 people in the U.S. who have achalasia versus maybe 60 million who have GERD (a few have both, but we won't go there today).

I've never heard the 60 million GERD people claim.... seems kinda high that 1 in 5 people have GERD? Six million I might believe, but 60 million seems really really high.

So, if I was to make some kind of a point out of all this, I would say we're screwed! Do the drug companies and surgeons want to help 60 million people and the revenues that it would be generate, or 3,000 people?

And given that this group has over 1,000 members, the vast majority of whom are from the USA (simply b/c this is an English-language forum), I think that we're dealing with way more than 3,000 people in the USA with achalasia. The membership in this group has exploded in the past couple of years, as more and more people learn how to use the internet to their own advantage. I wouldn't be surprised to see our membership top 2,000 in just a couple of years. Like I'm so fond of saying, KNOWLEDGE IS POWER!Debbi in Michigan

[Guest guest]

,

I think the Diffuse Esophageal Spasm that my husband has is

probably even more rare (or rare to have it very severly), so maybe it

could be up for an " orphan disease " nomination, too. It seems even

harder to find research being done for DES than A. I think both of

them need to be nominated!

in Michigan

>

>

> A good estimate of the U.S. population is just under 300 million.

Given that 1 in 100,000 supposedly have achalasia, then there would be

a mere 3,000 people in the U.S. (or an incredibly low 60 people per

state, assuming even distribution, which it can't be). Under this

assumption, if a surgeon has told you he has performed thousands of

Heller Myotomy's, chances are he's lying. (I'm just using the

masculine gender of the surgeon here, but chances are a female surgeon

wouldn't make that kind of claim).

>

> With the hypotheses that there are many people running around who

have achalasia but don't know it, and that the estimates have varied

from 1 in 5,000, to 1 in 15,000, then let's split the difference and

say that 1 in 10,000 have achalasia. Then 10 times the above numbers

would be our new results. It would be 30,000 people in the U.S. who

have achalasia versus maybe 60 million who have GERD (a few have both,

but we won't go there today).

>

> So, if I was to make some kind of a point out of all this, I would

say we're screwed! Do the drug companies and surgeons want to help 60

million people and the revenues that it would be generate, or 3,000

people?

>

> We've all heard of orphan diseases: diseases so rare that nobody is

interested in helping, unless the government kicks in with dollars.

I think Achalasia should be " nominated " to be an orphan disease, if we

are able to have a chance at a cure, or reliable treatment.

>

> With all due respect to the skilled and compassionate surgeons we

have tried to associate ourselves with, its the research dollars that

are needed to discover a cure. Perhaps someday, as a " byproduct " of

stem cell research, a cure will be found.

>

>

>

[Guest guest]

hellosue <suewalle@...> ha scritto: hello brenda sorry havent posted much lately, but just read your post about diffuse esophageal spasm that your husband has, well i have that also the top of my esophogus has the difuse spasms and the bottem is the achelasia had the surgery for the achelasia but coudnt do anything for the diffuse spasms, mind even with the surgery was told it wouldnt help the des anyways just wanted you to know that i sure know what your dad is going through sue w -- Re: COMPREHENSIBLE NUMBERS , I think the Diffuse Esophageal Spasm that my husband has is probably even more rare (or rare to have it very severly), so maybe it could be up for an "orphan disease" nomination, too. It seems even harder to find research being done for DES than A. I think both of them

need to be nominated! in Michigan

: gratis 1GB per i messaggi, antispam, antivirus, POP3

[Guest guest]

Well that is the first time I really feel clear about how rare the occurrence

is. That was

helpful.

Peggy, who went into social work because she couldn't keep up with her physicist

father in

math.

>

>

> A good estimate of the U.S. population is just under 300 million. Given that

1 in

100,000 supposedly have achalasia, then there would be a mere 3,000 people in

the U.S.

(or an incredibly low 60 people per state, assuming even distribution, which it

can't be).

Under this assumption, if a surgeon has told you he has performed thousands of

Heller

Myotomy's, chances are he's lying. (I'm just using the masculine gender of the

surgeon

here, but chances are a female surgeon wouldn't make that kind of claim).

>

> With the hypotheses that there are many people running around who have

achalasia but

don't know it, and that the estimates have varied from 1 in 5,000, to 1 in

15,000, then

let's split the difference and say that 1 in 10,000 have achalasia. Then 10

times the above

numbers would be our new results. It would be 30,000 people in the U.S. who

have

achalasia versus maybe 60 million who have GERD (a few have both, but we won't

go there

today).

>

> So, if I was to make some kind of a point out of all this, I would say we're

screwed! Do

the drug companies and surgeons want to help 60 million people and the revenues

that it

would be generate, or 3,000 people?

>

> We've all heard of orphan diseases: diseases so rare that nobody is interested

in helping,

unless the government kicks in with dollars. I think Achalasia should be

" nominated " to

be an orphan disease, if we are able to have a chance at a cure, or reliable

treatment.

>

> With all due respect to the skilled and compassionate surgeons we have tried

to

associate ourselves with, its the research dollars that are needed to discover a

cure.

Perhaps someday, as a " byproduct " of stem cell research, a cure will be found.

>

>

>

[Guest guest]

Hi ,>> Just so I understand....are diffuse esophageal spasms the same thing as the spasms one experiences when it is said that they have "Vigorous Achalasia" and feel as if they are having a heart attack? When I get that, I will immediately dissolve a nifedipine under my tongue, or have a drink of Diet Coke, if available. >> As you know, I am presently looking into the Cola Syrup "Cure" for when that happens. I want to thank in message #30091 and Maggie in #30097 for their suggestions to obtaining the cola syrup. I will report back to the Board once I try it in my moment of need. >> hello brenda sorry havent posted much lately, but just read your post about> diffuse esophageal spasm that your husband has, well i have that also the> top of my esophogus has the difuse spasms and the bottem is the achelasia > had the surgery for the achelasia but coudnt do anything for the diffuse> spasms, mind even with the surgery was told it wouldnt help the des anyways> just wanted you to know that i sure know what your dad is going through > > sue w > > -- Re: COMPREHENSIBLE NUMBERS > > , > I think the Diffuse Esophageal Spasm that my husband has is > probably even more rare (or rare to have it very severly), so maybe it > could be up for an "orphan disease" nomination, too. It seems even > harder to find research being done for DES than A. I think both of > them need to be nominated! > > in Michigan>

[Guest guest]

Hi Debbie, I stand by the 60 million regarding the number of people having GERD in this country. But I do agree with your assessment; its a riduclously high number, and what they have probably done is to take anybody who has ever suffered heartburn and added them to the group. My wife suffers from acid reflux 24/7 and she had the operation for it (or did she?). Interestingly, doctors operating on us achalasiacs don't want us to develop GERD from having the Myotomy (thus the Wrap). Conversely, my wife's surgeon did not want her to develop achalasis from making the wrap too tight! On occasion we each have the other's symptoms. >> A good estimate of the U.S. population is just under 300 million. Given that 1 in 100,000 supposedly have achalasia, then there would be a mere 3,000 people in the U.S. (or an incredibly low 60 people per state, assuming even distribution, which it can't be). Under this assumption, if a surgeon has told you he has performed thousands of Heller Myotomy's, chances are he's lying. (I'm just using the masculine gender of the surgeon here, but chances are a female surgeon wouldn't make that kind of claim).> > Depending on how long he's been practicing.... I think Dr. Rice had done a couple hundred as of two years ago, and I think he does 1-2/week. I imagine that Dr. Patti's numbers are similarly high. Doing 100/year would only take ten years to have done thousands. However, I don't recall any surgeons claiming to have done thousands of Hellers.> > With the hypotheses that there are many people running around who have achalasia but don't know it, and that the estimates have varied from 1 in 5,000, to 1 in 15,000, then let's split the difference and say that 1 in 10,000 have achalasia. Then 10 times the above numbers would be our new results. It would be 30,000 people in the U.S. who have achalasia versus maybe 60 million who have GERD (a few have both, but we won't go there today).> > I've never heard the 60 million GERD people claim.... seems kinda high that 1 in 5 people have GERD? Six million I might believe, but 60 million seems really really high.> > So, if I was to make some kind of a point out of all this, I would say we're screwed! Do the drug companies and surgeons want to help 60 million people and the revenues that it would be generate, or 3,000 people? > > And given that this group has over 1,000 members, the vast majority of whom are from the USA (simply b/c this is an English-language forum), I think that we're dealing with way more than 3,000 people in the USA with achalasia. The membership in this group has exploded in the past couple of years, as more and more people learn how to use the internet to their own advantage. I wouldn't be surprised to see our membership top 2,000 in just a couple of years. Like I'm so fond of saying, KNOWLEDGE IS POWER!> > Debbi in Michigan>

[Guest guest]

,

Regarding the stem cell research, here is a link you might be

interested in written by Dr. PJ Pasricha, a doctor who has visited our

group from time to time who does research on achalasia.

http://www.ddw.org/user-assets/documents/PDF/session_handouts/2004/books/Sunday/\

Sun1600Pasricha.pdf#search='gene%20therapy%2FP.J.%20Pasricha%2F%20achalasia'

According to this article, we are a logical candidate for gene therapy

due to the ease of reaching the esophagus via endoscopy!

Sandi in No CA

>

>

> A good estimate of the U.S. population is just under 300 million.

Given that 1 in 100,000 supposedly have achalasia, then there would be

a mere 3,000 people in the U.S. (or an incredibly low 60 people per

state, assuming even distribution, which it can't be). Under this

assumption, if a surgeon has told you he has performed thousands of

Heller Myotomy's, chances are he's lying. (I'm just using the

masculine gender of the surgeon here, but chances are a female surgeon

wouldn't make that kind of claim).

>

> With the hypotheses that there are many people running around who

have achalasia but don't know it, and that the estimates have varied

from 1 in 5,000, to 1 in 15,000, then let's split the difference and

say that 1 in 10,000 have achalasia. Then 10 times the above numbers

would be our new results. It would be 30,000 people in the U.S. who

have achalasia versus maybe 60 million who have GERD (a few have both,

but we won't go there today).

>

> So, if I was to make some kind of a point out of all this, I would

say we're screwed! Do the drug companies and surgeons want to help 60

million people and the revenues that it would be generate, or 3,000

people?

>

> We've all heard of orphan diseases: diseases so rare that nobody is

interested in helping, unless the government kicks in with dollars.

I think Achalasia should be " nominated " to be an orphan disease, if we

are able to have a chance at a cure, or reliable treatment.

>

> With all due respect to the skilled and compassionate surgeons we

have tried to associate ourselves with, its the research dollars that

are needed to discover a cure. Perhaps someday, as a " byproduct " of

stem cell research, a cure will be found.

>

>

>

[Guest guest]

,

I think there is a difference between DES and Vigorous Achalasia,

although their symptoms can be similar. I know that with DES, they've

measured some very high-amplitude contractions on my husband, not

regular peristalsis on his manometries. Also, some days he has some

pretty painful spasms (I've often wondered how it would look on a

manometry when he's having them), but as far as I understand his LES

relaxes properly (he doesn't have the classic " birds beak " on a barium

swallow), unlike with A. Like the people with A, though, he has

dysphagia and some days even his own saliva won't go down. Sorry to

get graphic, but I hope this answers your question. By the way, he

hasn't found anything to stop the spasms in their tracks. He's tried

nitroglycerine without success and hasn't had luck with trying to

drink hot or cold liquids (it just doesn't go down, anyway). He

mostly tries to lay still because too much movement can start the

spasms again.

>

>

>> Just so I understand....are diffuse esophageal spasms the same

thing as the spasms one experiences when it is said that they have

" Vigorous Achalasia " and feel as if they are having a heart attack?

When I get that, I will immediately dissolve a nifedipine under my

tongue, or have a drink of Diet Coke, if available. >>

>

[Guest guest]

hello brenda sorry havent posted much lately, but just read your post about diffuse esophageal spasm that your husband has, well i have that also the top of my esophogus has the difuse spasms and the bottem is the achelasia had the surgery for the achelasia but coudnt do anything for the diffuse spasms, mind even with the surgery was told it wouldnt help the des anyways just wanted you to know that i sure know what your dad is going through

sue w

-- Re: COMPREHENSIBLE NUMBERS

,

I think the Diffuse Esophageal Spasm that my husband has is

probably even more rare (or rare to have it very severly), so maybe it

could be up for an "orphan disease" nomination, too. It seems even

harder to find research being done for DES than A. I think both of

them need to be nominated!

in Michigan