Re: How rare is this disease? (Prognosis?)

[Guest guest]

Joy,

I'm not a doctor, but I can tell you what my GI has told me....

Yes, it is rare. About 1 in 100,000 people get it. He also

mentioned that lately he has been getting more and more achalasia

paitents. I'm not sure if that's because it's becoming more common,

or if patients are just finding him...

They have no idea what causes it. There are a few theories, but

nothing has been proven.

This is a quote from my GI... " It won't kill you, but it's very

annoying. " There can be complications if left untreated.

It's not that much to go on, but I hope it helps to ease your fears

a little.

Sharlene

> When I hear and read that Achalasia is a rare disease of unknown

> origin....it just led me to wonder how " Rare " is it? I havn't

been

> able to find any statistics....ie. 1/1000 people or whatever.

> Anyone know?

[Guest guest]

Joy,

This link looks like it may be able to answer some of your questions.

http://www.intelihealth.com/IH/ihtIH?

t=9908 & p=~br,IHW|~st,24479|~r,WSIHW000|~b,*|

Hope it helps,

Sharlene

> When I hear and read that Achalasia is a rare disease of unknown

> origin....it just led me to wonder how " Rare " is it? I havn't

been

> able to find any statistics....ie. 1/1000 people or whatever.

> Anyone know?

> Can you live to be 100 with it....or does it just eventually cause

so

> many complications that it's management kills you? (that wasn't a

fun

> question to ask- sorry - but I need to know). I realize that at

some

> age repeat surgeries become unrealistic.

> I know it will be managed in each situation differently and that

each

> persons case will vary....but other medical conditions seem to

have

> well documented prognosis.....I want to know what the statistics

or

> life expectancy rates or quality of life at various ages/stages

are

> expected to be. Does anyone know?

> Joy

[Guest guest]

Joy - I have read the stats that A is 1:100,000 - 150,000 people. It is very, very rare.

A will not kill you. Yes, you can get pneumonia from it and that can kill you. You probably can choke, though most of us know how to keep from doing that because we do it all the time!

I'm glad your E is only 5 cm....very, very glad for you. it is my understanding that the further along you are, the less effective the surgery can be, although as someone noted recently, this disease effects everyone differently. However, it IS PROGRESSIVE. Like MS and other diseases that effect the muscles and nerves, we will deal with this the rest of our lives.

Very glad you seem to have an excellent prognosis!!!! Cindi in PA (by the way, I only know of 2 people from PA who have this & no one from MD. I know there are people because the docs have done surgeries on them, but it shows you how rare it is. I have never met a flesh & blood person with A. Just you "cyber people!" lol!)

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[Guest guest]

<cut> However, it IS PROGRESSIVE. Like MS and other diseases that

> effect the muscles and nerves, we will deal with this the rest of

our lives.

Good Morning again Cindi,

I am so glad there is another early bird here! Anyway, do you know

if this is a disease where it can go into a sort of " remission? " or

just basically stop progressing? That is what I want to hear.

Or does it always keep chugging along? The statistics beyond 4 or 5

year post op. are difficult to locate on the internet.

Joy

[Guest guest]

unfortunately, I have never read anything about remission. I'm sure, like most diseases, it is different for each person. I have come to an acceptance that this is who I am now....I'll never be the same again! But it is OK. I wouldn't have met all of you if it weren't for this crazy illness. Cindi

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[Guest guest]

Joy wrote:

When I hear and read that Achalasia is a rare disease of unknown origin....it just led me to wonder how "Rare" is it? I havn't been able to find any statistics....ie. 1/1000 people or whatever. Anyone know?

Depending on who you listen to, the number ranges from 1/10,000 to 1/100,000. When I was first diagnosed almost a decade ago, I was told 1/300,000. (I used to joke that I always thought I was "one in a million" but instead I was only "one in a third of a million"! LOL) I think it's just being diagnosed and reported more now, so the disease itself is probably not getting "more common" but rather they're just figuring it out more often.

Can you live to be 100 with it....or does it just eventually cause so many complications that it's management kills you? (that wasn't a fun question to ask- sorry - but I need to know). I realize that at some age repeat surgeries become unrealistic. I know it will be managed in each situation differently and that each persons case will vary....but other medical conditions seem to have well documented prognosis.....I want to know what the statistics or life expectancy rates or quality of life at various ages/stages are expected to be. Does anyone know?

I've been told that the most common cause of death for achalasians is pneumonia from aspiration, and that really only happens in people who don't get treatment. With treatment, the cause of death is rarely considered to be achalasia, unless someone at some point chooses to refuse treatment. (Not sure why someone would do that, though -- even if at some point in time I had to have a feeding port put in through my abdominal wall [which is HIGHLY unlikely in the first place] I'd still choose that option over dying from lack of nutrition!)

At the medical conference that Sandi and I attended at TCC in April, they told of a 96yo man who they didn't dilate or operate on b/c of his frailty, so they gave him Botox injections every six months. He finally died a couple years later I believe from lung cancer (do you remember if that's what it was, Sandi? My notes are at the house.....)

There are no reported cases that I've ever seen of it progressing beyond just the esophagus to affect any other parts of the body. And even people who have had their esophagus removed go on to live happy, active lives.

I hope this helps a little -- feel free to keep asking questions!!!! We're here to help each other any way we can!Debbi in Michigan

[Guest guest]

Pepto Bismol

Pink wrote:

At

the medical conference that Sandi and I attended at TCC in April, they told of

a 96yo man who they didn't dilate or operate on b/c of his frailty, so they

gave him Botox injections every six months. He finally died a couple

years later I believe from lung cancer (do you remember if that's what it was,

Sandi? My notes are at the house.....)

Oops (blushing)…I must have taken one

of my “little daydreaming breaks” during that story Deb! I don’t

EVEN remember that. (Are you sure that wasn’t me snoring??? It was a loooong

day!) Why do you think I brought

the voice recorder along??? And then I couldn’t even remember to come

home with it!!!! LOL

Sandi

[Guest guest]

LOL -- I'll try to dig out my notes and see if I can find it.... it was just a little blurb at the time, so I'm hoping that I wrote it down!Pepto-Deb

RE: How "rare" is this disease? (Prognosis?)

Pepto Bismol Pink wrote:

At the medical conference that Sandi and I attended at TCC in April, they told of a 96yo man who they didn't dilate or operate on b/c of his frailty, so they gave him Botox injections every six months. He finally died a couple years later I believe from lung cancer (do you remember if that's what it was, Sandi? My notes are at the house.....)

Oops (blushing)…I must have taken one of my “little daydreaming breaks” during that story Deb! I don’t EVEN remember that. (Are you sure that wasn’t me snoring??? It was a loooong day!) Why do you think I brought the voice recorder along??? And then I couldn’t even remember to come home with it!!!! LOL

Sandi