Re: Rare Disease Day, February 29th

[Guest guest]

http://www.rarediseaseday.org/yourstory

You can also help by downloading and changing your facebook picture to the RDD

logo!!

Carolyn

mom of Cameron

myo'd and fundo'd '05

>

> Most people who have successful surgeries or treatments don't come

> back to this group. A total guess is that 90% don't come back. I've

> stayed in touch with quite a few that were very active here at the

> time I had surgery and most are still very satisfied, and don't check

> in here.

>

Last year we observed Rare Disease Day in this support group by posting

our stories. It was nice that some of the people who had moved on came

back to share how well they were doing. I hope many will return this

year. Perhaps you can spread the news and all those well doers will

return to offer hope. And those that aren't doing so well, it would be

nice to hear from them too.

If anyone wants to find those messages from last year you can check the

messages from last February and some of March.

Rare Disease Day

Focus for 2012: Solidarity, " Rare but strong together "

http://www.rarediseaseday.org/

http://www.rarediseaseday.org/country/finder

Participating countries/territories

notan

[Guest guest]

Notan - this is a good website and I posted it on my Facebook.

________________________________

From: notan ostrich <notan_ostrich@...>

achalasia

Sent: Friday, February 10, 2012 6:54 PM

Subject: Rare Disease Day, February 29th

 

Sandy wrote:

>

> Most people who have successful surgeries or treatments don't come

> back to this group. A total guess is that 90% don't come back. I've

> stayed in touch with quite a few that were very active here at the

> time I had surgery and most are still very satisfied, and don't check

> in here.

>

Last year we observed Rare Disease Day in this support group by posting

our stories. It was nice that some of the people who had moved on came

back to share how well they were doing. I hope many will return this

year. Perhaps you can spread the news and all those well doers will

return to offer hope. And those that aren't doing so well, it would be

nice to hear from them too.

If anyone wants to find those messages from last year you can check the

messages from last February and some of March.

Rare Disease Day

Focus for 2012: Solidarity, " Rare but strong together "

http://www.rarediseaseday.org/

http://www.rarediseaseday.org/country/finder

Participating countries/territories

notan

[Guest guest]

Notan,

 

Thank you for the reminder.  I hope your recovery has been continuing in a

positive way.

 

Recently when you mentioned Rare Disease Day, I tried looking up Achalasia, and

was unable to find it listed as a rare disease.  I also tried to determine

statistically if achalasia qualified for one since I did not see it listed.

Statistically achalasia does qualify. Perhaps then, it is not considered to be a

disease (you recall conversations in the past regarding " disease " vs.

" disorders. " ).  What do you think?

 

________________________________

From: notan ostrich <notan_ostrich@...>

achalasia

Sent: Tuesday, February 28, 2012 4:38 PM

Subject: Rare Disease Day, February 29th

 

Tomorrow is Rare Disease Day, February 29th.

It would nice to get updates on the stories of people who have had

treatments, or not, and how it is working out for them. If you gave your

story last year consider updating it this year. People often ask how

things go long-term, or why are there so many failure stories on the

site. This is one way for people who don't have problems to chime in and

tell us how good you are doing and for some of those old timers to let

us know how the years have treated them.

Here are links to some of last year's updates.

Julee So Calif.

achalasia/message/60870

Ann from the UK

achalasia/message/60832

Donna

achalasia/message/60834

in NC

achalasia/message/60837

Mike in Cincinnati

achalasia/message/60844

Me

achalasia/message/60846

Isabella

achalasia/message/60849

from LA

achalasia/message/60792

notan

[Guest guest]

Hi, .

wrote:

>

> I hope your recovery has been continuing in a positive way.

>

Yes, thank-you, both the achalasia and feet (still improving and out of

the boot again) are doing well.

> I tried looking up Achalasia, and was unable to find it listed as a

> rare disease. I also tried to determine statistically if achalasia

> qualified for one since I did not see it listed. Statistically

> achalasia does qualify.

>

According to, NORD, National Organization for Rare Disorders, in the

U.S., " a disease is considered rare if it is believed to affect fewer

than 200,000 Americans. " The prevalence for achalasia is figured to be

around 1 in 10,000 (incidence is 1 new case per 100,000/year) which

works out to about 31,000 of us in the US (US pop. 311,591,917 - Jul

2011), or less than one sixth as common as the standard. So, we are rare

and achalasia is in the NORD database. According to Eurordis, Rare

Diseases Europe, " in Europe a disease or disorder is defined as rare

when it affects less than 1 in 2000 citizens. " So again, 1 in 10,000 is

one fifth as common as the standard and we are rare.

NORD - Rare Disease Information

http://www.rarediseases.org/rare-disease-information

NORD - Achalasia

http://www.rarediseases.org/rare-disease-information/rare-diseases/byID/118/view\

Abstract

EURORDIS - What is a rare disease?

http://www.eurordis.org/content/what-rare-disease

See also:

Office of Rare Diseases Research (ORDR)

Rare Diseases and Related Terms

http://rarediseases.info.nih.gov/RareDiseaseList.aspx?PageID=1

Genetic and Rare Diseases Information Center (GARD)

http://rarediseases.info.nih.gov/GARD/Disease.aspx?PageID=4 & diseaseID=5708

At Orphanet (The portal for rare diseases and orphan drugs) achalasia is

number ORPHA number ORPHA930

http://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=EN & Expert=930

> you recall conversations in the past regarding " disease " vs.

> " disorders. " ).

>

I remember and stand by the claim that disease and disorder mean the

same thing and are used by medical professionals interchangeably.

notan

[Guest guest]

Just thought I would post a message about how I am doing now, first I want to

say Hi to , Notan, and Ann (if your still around reading the posts

on the board)

I was diagnosed with Achalasia in July 2006 and in September 2006 I had an Open

Heller and Wrap yesterday I went to see Mr Maynard at Oxford mentioned that I

had (in the last two weeks) two episodes or chest pain in the night and he has

written a prescription for some GTN spray (that is often used for patients with

Angina).

Aside from the two incidents in the past two week doing really well have gained

all the weight that I lost went down to 80 pounds before I was admitted to

hospital for surgery.

So this year it will be 6 years since my surgery and on the whole doing really

well.

Pippa (from the UK)

[Guest guest]

Hi, Pippa. Nice to hear from you and that you are doing well.

notan

[Guest guest]

Checking in late in the day on the 29th and saw the other posts.  For me, it

has been four years since my myotomy. 

 

I ended up at the Cleveland Clinic thanks to my Dad.  When I was diagnosed

with achalasia, he started calling for information.  (You don't mess with the

greatest generation!)  My Dad has since passed, but I will always be grateful

for his taking care of his little girl -- even if she is middle aged. 

 

Long story short, Dr. Rice did my myotomy.  Dr. Rice is also the person who

told me about this wonderful group. 

 

The dilation worked well for me.  I very rarely have difficulty with eating and

spasms are few.  I consider myself one of the luckiest people in the world.

 

My best wishes to everyone! 

 

Pam (Ohio)

________________________________

From: notan ostrich <notan_ostrich@...>

achalasia

Sent: Tuesday, February 28, 2012 4:38 PM

Subject: Rare Disease Day, February 29th

 

Tomorrow is Rare Disease Day, February 29th.

It would nice to get updates on the stories of people who have had

treatments, or not, and how it is working out for them. If you gave your

story last year consider updating it this year. People often ask how

things go long-term, or why are there so many failure stories on the

site. This is one way for people who don't have problems to chime in and

tell us how good you are doing and for some of those old timers to let

us know how the years have treated them.

Here are links to some of last year's updates.

Julee So Calif.

achalasia/message/60870

Ann from the UK

achalasia/message/60832

Donna

achalasia/message/60834

in NC

achalasia/message/60837

Mike in Cincinnati

achalasia/message/60844

Me

achalasia/message/60846

Isabella

achalasia/message/60849

from LA

achalasia/message/60792

notan

[Guest guest]

So glad to hear that you are doing well Pippa. I am still getting issues with my

j-tube feeding tube but i too am slowly getting there even if i have to rely on

the overnight feeds. Keep in touch now and again.

from the UK

________________________________

From: Pippa <manchesterpippa@...>

" achalasia " <achalasia >

Sent: Wednesday, February 29, 2012 3:55 PM

Subject: Re: Rare Disease Day, February 29th

 

Just thought I would post a message about how I am doing now, first I want to

say Hi to , Notan, and Ann (if your still around reading the posts

on the board)

I was diagnosed with Achalasia in July 2006 and in September 2006 I had an Open

Heller and Wrap yesterday I went to see Mr Maynard at Oxford mentioned that I

had (in the last two weeks) two episodes or chest pain in the night and he has

written a prescription for some GTN spray (that is often used for patients with

Angina).

Aside from the two incidents in the past two week doing really well have gained

all the weight that I lost went down to 80 pounds before I was admitted to

hospital for surgery.

So this year it will be 6 years since my surgery and on the whole doing really

well.

Pippa (from the UK)

[Guest guest]

Pippa,

 

Glad to hear some positive news! I am very happy your treatment worked!

 

Kim A

Wisconsin

________________________________

From: Pippa <manchesterpippa@...>

" achalasia " <achalasia >

Sent: Wednesday, February 29, 2012 9:55 AM

Subject: Re: Rare Disease Day, February 29th

 

Just thought I would post a message about how I am doing now, first I want to

say Hi to , Notan, and Ann (if your still around reading the posts

on the board)

I was diagnosed with Achalasia in July 2006 and in September 2006 I had an Open

Heller and Wrap yesterday I went to see Mr Maynard at Oxford mentioned that I

had (in the last two weeks) two episodes or chest pain in the night and he has

written a prescription for some GTN spray (that is often used for patients with

Angina).

Aside from the two incidents in the past two week doing really well have gained

all the weight that I lost went down to 80 pounds before I was admitted to

hospital for surgery.

So this year it will be 6 years since my surgery and on the whole doing really

well.

Pippa (from the UK)