Re: research into the cause of A/sending letters to encourage research

[Guest guest]

Vicki,

Dr. P. Jay Pasricha and Micci in Galveston, Texas are

researching stem cell therapy for achalasia. (Incidentally, it

was Dr. Pasricha who developed the use of botox for achalasia.)

So far, they have promising results in mice.

Here is an interesting article on their stem cell research.

(Quote from Dr. Micci: " We try to destroy the sphincter with

surgery, to cut the muscle, but the sphincter is not the problem.

The problem is the nerves, and the only way to cure achalasia is

to replace the nerves. " )

http://www.utmb.edu/utmbmagazine/archive/03_Fall/strands/GI_disorders.htm

I emailed Dr. Pasricha and Dr. Micci a couple of months ago to

ask whether and when they plan to start trials in humans. Dr.

Pasricha replied: " At the present time, we are not ready for

human trials. Hopefully, this will be a realistic possibility

within 2-3 years. " And Dr. Micci promised, " We will work hard to

try to find a cure. "

Their group seems to have a patent on this use of stem cells, and

I wonder if that means they're the only ones who have any

possibility of doing research in this area.

I think it's a good idea to write to the NIH to encourage more

research on achalasia, including stem cell therapy. The address

is:

National Institutes of Health (NIH)

9000 Rockville Pike

Bethesda, land 20892

Tel. 301-496-4000

Two institutes of NHI in particular might be relevant:

National Institute of Diabetes and Digestive and Kidney Diseases

Office of Communications and Public Liaison,

NIH, Building 31, room 9A04 Center Drive,

MSC 2560, Bethesda, MD 20892-2560, USA.

National Institute of Neurological Disorders and Stroke

P.O. Box 5801

Bethesda, MD 20824

-- in Lancaster, PA

[Guest guest]

,

Your post is extremely helpful! I am glad someone is at least

looking into this. I was actually wondering if stem cell treatments

might help (we have been discussing them in one of my law school

classes). I think a lot of this rearch is in its early stages but

hopefully it will lead to promising results. Clinical trials take

several years so it is best not to expect anything soon.

I actually worked as a patent agent (and am in the process of

becoming a patent lawyer). When I have more free time, I will look

into the patent and let you know what I think.

Vicki from CA

>

> Vicki,

>

> Dr. P. Jay Pasricha and Micci in Galveston, Texas are

> researching stem cell therapy for achalasia. (Incidentally, it

> was Dr. Pasricha who developed the use of botox for achalasia.)

> So far, they have promising results in mice.

>

> Here is an interesting article on their stem cell research.

> (Quote from Dr. Micci: " We try to destroy the sphincter with

> surgery, to cut the muscle, but the sphincter is not the problem.

> The problem is the nerves, and the only way to cure achalasia is

> to replace the nerves. " )

>

http://www.utmb.edu/utmbmagazine/archive/03_Fall/strands/GI_disorders

..htm

>

> I emailed Dr. Pasricha and Dr. Micci a couple of months ago to

> ask whether and when they plan to start trials in humans. Dr.

> Pasricha replied: " At the present time, we are not ready for

> human trials. Hopefully, this will be a realistic possibility

> within 2-3 years. " And Dr. Micci promised, " We will work hard to

> try to find a cure. "

>

> Their group seems to have a patent on this use of stem cells, and

> I wonder if that means they're the only ones who have any

> possibility of doing research in this area.

>

> I think it's a good idea to write to the NIH to encourage more

> research on achalasia, including stem cell therapy. The address

> is:

>

> National Institutes of Health (NIH)

> 9000 Rockville Pike

> Bethesda, land 20892

>

> Tel. 301-496-4000

>

> Two institutes of NHI in particular might be relevant:

>

> National Institute of Diabetes and Digestive and Kidney Diseases

> Office of Communications and Public Liaison,

> NIH, Building 31, room 9A04 Center Drive,

> MSC 2560, Bethesda, MD 20892-2560, USA.

>

> National Institute of Neurological Disorders and Stroke

> P.O. Box 5801

> Bethesda, MD 20824

>

> -- in Lancaster, PA

>

[Guest guest]

,

Thank you so much for taking the time to research and come up

with sample letters for the group! I wonder if the docs you mentioned

are working on research into other E motility disorders (or if

research on A will ultimately help those with other disorders). I may

change any letters I send to include other motility disorders (since

my husband has DES and not A), too. Sometimes, just having something

to do (i.e. writing letters to encourage research) helps us to not

feel so powerless against diseases we can't control. I know it helped

in my case today. I was feeling a little discouraged, seeing go

through the painful spasms and seeing his weight loss and feeling

powerless to help him. Thanks again for taking the time to do this!

Have a great weekend!

in Michigan

>

> Vicki,

>

> Dr. P. Jay Pasricha and Micci in Galveston, Texas are

> researching stem cell therapy for achalasia. (Incidentally, it

> was Dr. Pasricha who developed the use of botox for achalasia.)

> So far, they have promising results in mice.

>

> Here is an interesting article on their stem cell research.

> (Quote from Dr. Micci: " We try to destroy the sphincter with

> surgery, to cut the muscle, but the sphincter is not the problem.

> The problem is the nerves, and the only way to cure achalasia is

> to replace the nerves. " )

>

http://www.utmb.edu/utmbmagazine/archive/03_Fall/strands/GI_disorders.htm

>

> I emailed Dr. Pasricha and Dr. Micci a couple of months ago to

> ask whether and when they plan to start trials in humans. Dr.

> Pasricha replied: " At the present time, we are not ready for

> human trials. Hopefully, this will be a realistic possibility

> within 2-3 years. " And Dr. Micci promised, " We will work hard to

> try to find a cure. "

>

> Their group seems to have a patent on this use of stem cells, and

> I wonder if that means they're the only ones who have any

> possibility of doing research in this area.

>

> I think it's a good idea to write to the NIH to encourage more

> research on achalasia, including stem cell therapy. The address

> is:

>

> National Institutes of Health (NIH)

> 9000 Rockville Pike

> Bethesda, land 20892

>

> Tel. 301-496-4000

>

> Two institutes of NHI in particular might be relevant:

>

> National Institute of Diabetes and Digestive and Kidney Diseases

> Office of Communications and Public Liaison,

> NIH, Building 31, room 9A04 Center Drive,

> MSC 2560, Bethesda, MD 20892-2560, USA.

>

> National Institute of Neurological Disorders and Stroke

> P.O. Box 5801

> Bethesda, MD 20824

>

> -- in Lancaster, PA

>

[Guest guest]

, I don't think their work is limited to achalasia, or even

to the esophagus. Possibly it would apply to DES if that is also

a nerve disorder.

Articles by Dr. Pasricha:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed & cmd=Search & itool=PubMed_\

Abstract & term=%22Pasricha+PJ%22%5BAuthor%5D

and by Dr. Micci:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed & cmd=Search & itool=pubmed_\

Abstract & term=%22Micci+MA%22%5BAuthor%5D

Re: research into the cause of A/sending

letters to encourage research

,

Thank you so much for taking the time to research and come

up

with sample letters for the group! I wonder if the docs you

mentioned

are working on research into other E motility disorders (or if

research on A will ultimately help those with other disorders).

I may

change any letters I send to include other motility disorders

(since

my husband has DES and not A), too. Sometimes, just having

something

to do (i.e. writing letters to encourage research) helps us to

not

feel so powerless against diseases we can't control. I know it

helped

in my case today. I was feeling a little discouraged, seeing

go

through the painful spasms and seeing his weight loss and feeling

powerless to help him. Thanks again for taking the time to do

this!

Have a great weekend!

in Michigan

>

> Vicki,

>

> Dr. P. Jay Pasricha and Micci in Galveston, Texas are

> researching stem cell therapy for achalasia. (Incidentally, it

> was Dr. Pasricha who developed the use of botox for achalasia.)

> So far, they have promising results in mice.

>

> Here is an interesting article on their stem cell research.

> (Quote from Dr. Micci: " We try to destroy the sphincter with

> surgery, to cut the muscle, but the sphincter is not the

> problem.

> The problem is the nerves, and the only way to cure achalasia

> is

> to replace the nerves. " )

>

http://www.utmb.edu/utmbmagazine/archive/03_Fall/strands/GI_disorders.htm

>

> I emailed Dr. Pasricha and Dr. Micci a couple of months ago to

> ask whether and when they plan to start trials in humans. Dr.

> Pasricha replied: " At the present time, we are not ready for

> human trials. Hopefully, this will be a realistic possibility

> within 2-3 years. " And Dr. Micci promised, " We will work hard

> to

> try to find a cure. "

>

> Their group seems to have a patent on this use of stem cells,

> and

> I wonder if that means they're the only ones who have any

> possibility of doing research in this area.

>

> I think it's a good idea to write to the NIH to encourage more

> research on achalasia, including stem cell therapy. The

> address

> is:

>

> National Institutes of Health (NIH)

> 9000 Rockville Pike

> Bethesda, land 20892

>

> Tel. 301-496-4000

>

> Two institutes of NHI in particular might be relevant:

>

> National Institute of Diabetes and Digestive and Kidney

> Diseases

> Office of Communications and Public Liaison,

> NIH, Building 31, room 9A04 Center Drive,

> MSC 2560, Bethesda, MD 20892-2560, USA.

>

> National Institute of Neurological Disorders and Stroke

> P.O. Box 5801

> Bethesda, MD 20824

>

> -- in Lancaster, PA

>

[Guest guest]

I believe that the Cleveland Clinic is researching. Dr. Rice, in fact, just told me at my May 4th consultation that the cause was a virus. That's the first I heard about a cause.

(in Ohio)

From: achalasia [mailto:achalasia ] On Behalf Of VickiSent: Friday, May 12, 2006 2:03 PMachalasia Subject: research into the cause of A/sending letters to encourage research

I realize the cause of A is unknown. I was wondering if anyone was aware of any doctors, hospitals, pharmaceutical/biotech companies, etc looking into it. If so, I would like to read about their research.My concern is that given there are so few of us, there is less motivation to find a cause and a cure for our problem. I am not counting on it, but it would be great if there was later a treatment that could cause me to regain some of my muscle activity in my E (though I realize this would be several years away).So, when I have free time (not sure when that will be), I want to1) write to the doctor who told me I was imagining my swallowing problem to tell him how frustrating that was to me2) write to someone (I am not sure who) to encourage more research in to A. May I could write a GI doctors' scoiety, the NIH, etc... Please let me know if you have ideas.3) And write GI doctors' scoieties to encourage doctors to take people with swallowing problems more seriously since many people on the board seem to have been orginially told they didn't have a medical problem. Let me know if you know of any places I could write.Vicki from CA

[Guest guest]

Hey

I was just over there and seen Dr.

Achkar!!! Kind of miss seeing Dr. Rice, NOT THAT I WANT TO SEE HIM

LOL. I had a dilation done while I was there last weekend.

in Indiana

From:

achalasia [mailto:achalasia ] On Behalf Of Lay, A.

Sent: Monday, May 15, 2006 9:22 AM

achalasia

Subject: RE: research

into the cause of A/sending letters to encourage research

I believe that the Cleveland Clinic is

researching. Dr. Rice, in fact, just told me at my May 4th consultation

that the cause was a virus. That's the first I heard about a cause.

(in Ohio)

From:

achalasia [mailto:achalasia ] On Behalf Of Vicki

Sent: Friday, May 12, 2006 2:03 PM

achalasia

Subject: research into

the cause of A/sending letters to encourage research

I realize the cause of A is unknown. I was wondering if anyone

was

aware of any doctors, hospitals, pharmaceutical/biotech companies,

etc looking into it. If so, I would like to read about their

research.

My concern is that given there are so few of us, there is less

motivation to find a cause and a cure for our problem. I am not

counting on it, but it would be great if there was later a treatment

that could cause me to regain some of my muscle activity in my E

(though I realize this would be several years away).

So, when I have free time (not sure when that will be), I want to

1) write to the doctor who told me I was imagining my swallowing

problem to tell him how frustrating that was to me

2) write to someone (I am not sure who) to encourage more research

in to A. May I could write a GI doctors' scoiety, the NIH, etc...

Please let me know if you have ideas.

3) And write GI doctors' scoieties to encourage doctors to take

people with swallowing problems more seriously since many people on

the board seem to have been orginially told they didn't have a

medical problem. Let me know if you know of any places I could

write.

Vicki from CA

[Guest guest]

,

It sounds like it went ok. Hopefully it will do the trick for a good long time.

From: achalasia [mailto:achalasia ] On Behalf Of MimmsSent: Monday, May 15, 2006 9:44 AMachalasia Subject: RE: research into the cause of A/sending letters to encourage research

Hey

I was just over there and seen Dr. Achkar!!! Kind of miss seeing Dr. Rice, NOT THAT I WANT TO SEE HIM LOL. I had a dilation done while I was there last weekend.

in Indiana

From: achalasia [mailto:achalasia ] On Behalf Of Lay, A.Sent: Monday, May 15, 2006 9:22 AMachalasia Subject: RE: research into the cause of A/sending letters to encourage research

I believe that the Cleveland Clinic is researching. Dr. Rice, in fact, just told me at my May 4th consultation that the cause was a virus. That's the first I heard about a cause.

(in Ohio)

From: achalasia [mailto:achalasia ] On Behalf Of VickiSent: Friday, May 12, 2006 2:03 PMachalasia Subject: research into the cause of A/sending letters to encourage research

I realize the cause of A is unknown. I was wondering if anyone was aware of any doctors, hospitals, pharmaceutical/biotech companies, etc looking into it. If so, I would like to read about their research.My concern is that given there are so few of us, there is less motivation to find a cause and a cure for our problem. I am not counting on it, but it would be great if there was later a treatment that could cause me to regain some of my muscle activity in my E (though I realize this would be several years away).So, when I have free time (not sure when that will be), I want to1) write to the doctor who told me I was imagining my swallowing problem to tell him how frustrating that was to me2) write to someone (I am not sure who) to encourage more research in to A. May I could write a GI doctors' scoiety, the NIH, etc... Please let me know if you have ideas.3) And write GI doctors' scoieties to encourage doctors to take people with swallowing problems more seriously since many people on the board seem to have been orginially told they didn't have a medical problem. Let me know if you know of any places I could write.Vicki from CA

[Guest guest]

Well I’m hoping, they used a 19mm on

me this time and said he could only go up to 20,,,YIKES!!! Guess there

won’t be many stretches left in my future!!! I’ve done really

good for 2 years. I’m still having some issues, but I’ll give

it a few days for everything to calm down sort a speak. I am really

hoping that I don’t have to go through major surgery anytime soon!!!!

By the way how have you been?

From: achalasia

[mailto:achalasia ] On Behalf

Of Lay, A.

Sent: Monday, May 15, 2006 10:11

AM

achalasia

Subject: RE: research

into the cause of A/sending letters to encourage research

,

It sounds like it went ok. Hopefully

it will do the trick for a good long time.

From:

achalasia [mailto:achalasia ] On Behalf Of Mimms

Sent: Monday, May 15, 2006 9:44 AM

achalasia

Subject: RE: research

into the cause of A/sending letters to encourage research

Hey

I was just over there and seen Dr.

Achkar!!! Kind of miss seeing Dr. Rice, NOT THAT I WANT TO SEE HIM

LOL. I had a dilation done while I was there last weekend.

in Indiana

From:

achalasia [mailto:achalasia ] On Behalf Of Lay, A.

Sent: Monday, May 15, 2006 9:22 AM

achalasia

Subject: RE: research

into the cause of A/sending letters to encourage research

I believe that the Cleveland Clinic is

researching. Dr. Rice, in fact, just told me at my May 4th consultation

that the cause was a virus. That's the first I heard about a cause.

(in Ohio)

From:

achalasia [mailto:achalasia ] On Behalf Of Vicki

Sent: Friday, May 12, 2006 2:03 PM

achalasia

Subject: research into

the cause of A/sending letters to encourage research

I realize the cause of A

is unknown. I was wondering if anyone was

aware of any doctors, hospitals, pharmaceutical/biotech companies,

etc looking into it. If so, I would like to read about their

research.

My concern is that given there are so few of us, there is less

motivation to find a cause and a cure for our problem. I am not

counting on it, but it would be great if there was later a treatment

that could cause me to regain some of my muscle activity in my E

(though I realize this would be several years away).

So, when I have free time (not sure when that will be), I want to

1) write to the doctor who told me I was imagining my swallowing

problem to tell him how frustrating that was to me

2) write to someone (I am not sure who) to encourage more research

in to A. May I could write a GI doctors' scoiety, the NIH, etc...

Please let me know if you have ideas.

3) And write GI doctors' scoieties to encourage doctors to take

people with swallowing problems more seriously since many people on

the board seem to have been orginially told they didn't have a

medical problem. Let me know if you know of any places I could

write.

Vicki from CA

[Guest guest]

,

I haven't been too bad. There is some difficulty with every meal, but I'm still able to eat. It helps to guzzle a ton of liquid with every bite. I have some choking and coughing most nights and regurgitate a few times a week. My weight loss has sustained at about 17 pounds. Compared to many stories I've heard, it doesn't seem too extreme. I am hoping, though, that my June 14th surgery helps improve matters.

Thanks for asking.

From: achalasia [mailto:achalasia ] On Behalf Of MimmsSent: Monday, May 15, 2006 10:54 AMachalasia Subject: RE: research into the cause of A/sending letters to encourage research

Well I’m hoping, they used a 19mm on me this time and said he could only go up to 20,,,YIKES!!! Guess there won’t be many stretches left in my future!!! I’ve done really good for 2 years. I’m still having some issues, but I’ll give it a few days for everything to calm down sort a speak. I am really hoping that I don’t have to go through major surgery anytime soon!!!! By the way how have you been?

From: achalasia [mailto:achalasia ] On Behalf Of Lay, A.Sent: Monday, May 15, 2006 10:11 AMachalasia Subject: RE: research into the cause of A/sending letters to encourage research

,

It sounds like it went ok. Hopefully it will do the trick for a good long time.

From: achalasia [mailto:achalasia ] On Behalf Of MimmsSent: Monday, May 15, 2006 9:44 AMachalasia Subject: RE: research into the cause of A/sending letters to encourage research

Hey

I was just over there and seen Dr. Achkar!!! Kind of miss seeing Dr. Rice, NOT THAT I WANT TO SEE HIM LOL. I had a dilation done while I was there last weekend.

in Indiana

From: achalasia [mailto:achalasia ] On Behalf Of Lay, A.Sent: Monday, May 15, 2006 9:22 AMachalasia Subject: RE: research into the cause of A/sending letters to encourage research

I believe that the Cleveland Clinic is researching. Dr. Rice, in fact, just told me at my May 4th consultation that the cause was a virus. That's the first I heard about a cause.

(in Ohio)

From: achalasia [mailto:achalasia ] On Behalf Of VickiSent: Friday, May 12, 2006 2:03 PMachalasia Subject: research into the cause of A/sending letters to encourage research

I realize the cause of A is unknown. I was wondering if anyone was aware of any doctors, hospitals, pharmaceutical/biotech companies, etc looking into it. If so, I would like to read about their research.My concern is that given there are so few of us, there is less motivation to find a cause and a cure for our problem. I am not counting on it, but it would be great if there was later a treatment that could cause me to regain some of my muscle activity in my E (though I realize this would be several years away).So, when I have free time (not sure when that will be), I want to1) write to the doctor who told me I was imagining my swallowing problem to tell him how frustrating that was to me2) write to someone (I am not sure who) to encourage more research in to A. May I could write a GI doctors' scoiety, the NIH, etc... Please let me know if you have ideas.3) And write GI doctors' scoieties to encourage doctors to take people with swallowing problems more seriously since many people on the board seem to have been orginially told they didn't have a medical problem. Let me know if you know of any places I could write.Vicki from CA

[Guest guest]

OH good so you got a date!!! I remember

those days, I’ve just had stuff sticking a lot and some regurgitation.

Thought Dr. Achkar said that I did have some narrowing but told me since he can

only stretch me one more time, that I need to hang on as long as possible.

In other words wait til I get in dyer

straights!!!

From:

achalasia [mailto:achalasia ] On Behalf Of Lay, A.

Sent: Monday, May 15, 2006 11:11

AM

achalasia

Subject: RE: research

into the cause of A/sending letters to encourage research

,

I haven't been too bad. There is

some difficulty with every meal, but I'm still able to eat. It helps to

guzzle a ton of liquid with every bite. I have some choking and coughing

most nights and regurgitate a few times a week. My weight loss has

sustained at about 17 pounds. Compared to many stories I've heard, it

doesn't seem too extreme. I am hoping, though, that my June 14th surgery

helps improve matters.

Thanks for asking.

From:

achalasia [mailto:achalasia ] On Behalf Of Mimms

Sent: Monday, May 15, 2006 10:54

AM

achalasia

Subject: RE: research

into the cause of A/sending letters to encourage research

Well I’m hoping, they used a 19mm on

me this time and said he could only go up to 20,,,YIKES!!! Guess there

won’t be many stretches left in my future!!! I’ve done really

good for 2 years. I’m still having some issues, but I’ll give

it a few days for everything to calm down sort a speak. I am really

hoping that I don’t have to go through major surgery anytime

soon!!!! By the way how have you been?

From:

achalasia [mailto:achalasia ] On Behalf Of Lay, A.

Sent: Monday, May 15, 2006 10:11

AM

achalasia

Subject: RE: research

into the cause of A/sending letters to encourage research

,

It sounds like it went ok. Hopefully

it will do the trick for a good long time.

From:

achalasia [mailto:achalasia ] On Behalf Of Mimms

Sent: Monday, May 15, 2006 9:44 AM

achalasia

Subject: RE: research

into the cause of A/sending letters to encourage research

Hey

I was just over there and seen Dr.

Achkar!!! Kind of miss seeing Dr. Rice, NOT THAT I WANT TO SEE HIM

LOL. I had a dilation done while I was there last weekend.

in Indiana

From:

achalasia [mailto:achalasia ] On Behalf Of Lay, A.

Sent: Monday, May 15, 2006 9:22 AM

achalasia

Subject: RE: research

into the cause of A/sending letters to encourage research

I believe that the Cleveland Clinic is

researching. Dr. Rice, in fact, just told me at my May 4th consultation

that the cause was a virus. That's the first I heard about a cause.

(in Ohio)

From:

achalasia [mailto:achalasia ] On Behalf Of Vicki

Sent: Friday, May 12, 2006 2:03 PM

achalasia

Subject: research into

the cause of A/sending letters to encourage research

I realize the cause of A

is unknown. I was wondering if anyone was

aware of any doctors, hospitals, pharmaceutical/biotech companies,

etc looking into it. If so, I would like to read about their

research.

My concern is that given there are so few of us, there is less

motivation to find a cause and a cure for our problem. I am not

counting on it, but it would be great if there was later a treatment

that could cause me to regain some of my muscle activity in my E

(though I realize this would be several years away).

So, when I have free time (not sure when that will be), I want to

1) write to the doctor who told me I was imagining my swallowing

problem to tell him how frustrating that was to me

2) write to someone (I am not sure who) to encourage more research

in to A. May I could write a GI doctors' scoiety, the NIH, etc...

Please let me know if you have ideas.

3) And write GI doctors' scoieties to encourage doctors to take

people with swallowing problems more seriously since many people on

the board seem to have been orginially told they didn't have a

medical problem. Let me know if you know of any places I could

write.

Vicki from CA

[Guest guest]

Nice when the doctors tell you - don't come back until you're desperate (lol).

From: achalasia [mailto:achalasia ] On Behalf Of MimmsSent: Monday, May 15, 2006 12:13 PMachalasia Subject: RE: research into the cause of A/sending letters to encourage research

OH good so you got a date!!! I remember those days, I’ve just had stuff sticking a lot and some regurgitation. Thought Dr. Achkar said that I did have some narrowing but told me since he can only stretch me one more time, that I need to hang on as long as possible.

In other words wait til I get in dyer straights!!!

From: achalasia [mailto:achalasia ] On Behalf Of Lay, A.Sent: Monday, May 15, 2006 11:11 AMachalasia Subject: RE: research into the cause of A/sending letters to encourage research

,

I haven't been too bad. There is some difficulty with every meal, but I'm still able to eat. It helps to guzzle a ton of liquid with every bite. I have some choking and coughing most nights and regurgitate a few times a week. My weight loss has sustained at about 17 pounds. Compared to many stories I've heard, it doesn't seem too extreme. I am hoping, though, that my June 14th surgery helps improve matters.

Thanks for asking.

From: achalasia [mailto:achalasia ] On Behalf Of MimmsSent: Monday, May 15, 2006 10:54 AMachalasia Subject: RE: research into the cause of A/sending letters to encourage research

Well I’m hoping, they used a 19mm on me this time and said he could only go up to 20,,,YIKES!!! Guess there won’t be many stretches left in my future!!! I’ve done really good for 2 years. I’m still having some issues, but I’ll give it a few days for everything to calm down sort a speak. I am really hoping that I don’t have to go through major surgery anytime soon!!!! By the way how have you been?

From: achalasia [mailto:achalasia ] On Behalf Of Lay, A.Sent: Monday, May 15, 2006 10:11 AMachalasia Subject: RE: research into the cause of A/sending letters to encourage research

,

It sounds like it went ok. Hopefully it will do the trick for a good long time.

From: achalasia [mailto:achalasia ] On Behalf Of MimmsSent: Monday, May 15, 2006 9:44 AMachalasia Subject: RE: research into the cause of A/sending letters to encourage research

Hey

I was just over there and seen Dr. Achkar!!! Kind of miss seeing Dr. Rice, NOT THAT I WANT TO SEE HIM LOL. I had a dilation done while I was there last weekend.

in Indiana

From: achalasia [mailto:achalasia ] On Behalf Of Lay, A.Sent: Monday, May 15, 2006 9:22 AMachalasia Subject: RE: research into the cause of A/sending letters to encourage research

I believe that the Cleveland Clinic is researching. Dr. Rice, in fact, just told me at my May 4th consultation that the cause was a virus. That's the first I heard about a cause.

(in Ohio)

From: achalasia [mailto:achalasia ] On Behalf Of VickiSent: Friday, May 12, 2006 2:03 PMachalasia Subject: research into the cause of A/sending letters to encourage research

I realize the cause of A is unknown. I was wondering if anyone was aware of any doctors, hospitals, pharmaceutical/biotech companies, etc looking into it. If so, I would like to read about their research.My concern is that given there are so few of us, there is less motivation to find a cause and a cure for our problem. I am not counting on it, but it would be great if there was later a treatment that could cause me to regain some of my muscle activity in my E (though I realize this would be several years away).So, when I have free time (not sure when that will be), I want to1) write to the doctor who told me I was imagining my swallowing problem to tell him how frustrating that was to me2) write to someone (I am not sure who) to encourage more research in to A. May I could write a GI doctors' scoiety, the NIH, etc... Please let me know if you have ideas.3) And write GI doctors' scoieties to encourage doctors to take people with swallowing problems more seriously since many people on the board seem to have been orginially told they didn't have a medical problem. Let me know if you know of any places I could write.Vicki from CA

[Guest guest]

Yeah I know!!!!! I’ll just

hang on as long as possible now I guess LOL. If I do have to go through a

surgery I would rather do it while I’m still young enough to recovery

easier!!!!

From:

achalasia [mailto:achalasia ] On Behalf Of Lay, A.

Sent: Monday, May 15, 2006 12:58

PM

achalasia

Subject: RE: research

into the cause of A/sending letters to encourage research

Nice when the doctors tell you - don't

come back until you're desperate (lol).

From:

achalasia [mailto:achalasia ] On Behalf Of Mimms

Sent: Monday, May 15, 2006 12:13

PM

achalasia

Subject: RE: research

into the cause of A/sending letters to encourage research

OH good so you got a date!!! I

remember those days, I’ve just had stuff sticking a lot and some

regurgitation. Thought Dr. Achkar said that I did have some narrowing but

told me since he can only stretch me one more time, that I need to hang on as

long as possible.

In other words wait til I get in dyer

straights!!!

From:

achalasia [mailto:achalasia ] On Behalf Of Lay, A.

Sent: Monday, May 15, 2006 11:11

AM

achalasia

Subject: RE: research

into the cause of A/sending letters to encourage research

,

I haven't been too bad. There is

some difficulty with every meal, but I'm still able to eat. It helps to

guzzle a ton of liquid with every bite. I have some choking and coughing

most nights and regurgitate a few times a week. My weight loss has

sustained at about 17 pounds. Compared to many stories I've heard, it doesn't

seem too extreme. I am hoping, though, that my June 14th surgery helps

improve matters.

Thanks for asking.

From:

achalasia [mailto:achalasia ] On Behalf Of Mimms

Sent: Monday, May 15, 2006 10:54

AM

achalasia

Subject: RE: research

into the cause of A/sending letters to encourage research

Well I’m hoping, they used a 19mm on

me this time and said he could only go up to 20,,,YIKES!!! Guess there

won’t be many stretches left in my future!!! I’ve done really

good for 2 years. I’m still having some issues, but I’ll give

it a few days for everything to calm down sort a speak. I am really

hoping that I don’t have to go through major surgery anytime

soon!!!! By the way how have you been?

From:

achalasia [mailto:achalasia ] On Behalf Of Lay, A.

Sent: Monday, May 15, 2006 10:11

AM

achalasia

Subject: RE: research

into the cause of A/sending letters to encourage research

,

It sounds like it went ok. Hopefully

it will do the trick for a good long time.

From:

achalasia [mailto:achalasia ] On Behalf Of Mimms

Sent: Monday, May 15, 2006 9:44 AM

achalasia

Subject: RE: research

into the cause of A/sending letters to encourage research

Hey

I was just over there and seen Dr.

Achkar!!! Kind of miss seeing Dr. Rice, NOT THAT I WANT TO SEE HIM

LOL. I had a dilation done while I was there last weekend.

in Indiana

From:

achalasia [mailto:achalasia ] On Behalf Of Lay, A.

Sent: Monday, May 15, 2006 9:22 AM

achalasia

Subject: RE: research

into the cause of A/sending letters to encourage research

I believe that the Cleveland Clinic is

researching. Dr. Rice, in fact, just told me at my May 4th consultation

that the cause was a virus. That's the first I heard about a cause.

(in Ohio)

From: achalasia

[mailto:achalasia ] On Behalf

Of Vicki

Sent: Friday, May 12, 2006 2:03 PM

achalasia

Subject: research into

the cause of A/sending letters to encourage research

I realize the cause of A

is unknown. I was wondering if anyone was

aware of any doctors, hospitals, pharmaceutical/biotech companies,

etc looking into it. If so, I would like to read about their

research.

My concern is that given there are so few of us, there is less

motivation to find a cause and a cure for our problem. I am not

counting on it, but it would be great if there was later a treatment

that could cause me to regain some of my muscle activity in my E

(though I realize this would be several years away).

So, when I have free time (not sure when that will be), I want to

1) write to the doctor who told me I was imagining my swallowing

problem to tell him how frustrating that was to me

2) write to someone (I am not sure who) to encourage more research

in to A. May I could write a GI doctors' scoiety, the NIH, etc...

Please let me know if you have ideas.

3) And write GI doctors' scoieties to encourage doctors to take

people with swallowing problems more seriously since many people on

the board seem to have been orginially told they didn't have a

medical problem. Let me know if you know of any places I could

write.

Vicki from CA