Welcome Letter

[Guest guest]

Here is Debbi’s Welcome Letter:

T

Welcome " aboard " to any

new (or lurking) members of the Achalasia Group! This message is to let

everyone know about what this group is (and isn't!) and how to use the information in

this group to your best advantage.

First of all, this group is a

SUPPORT group. Soliciting/Selling, Spamming, Flaming, Trolling, and Personal

Attacks are not tolerated within this group. (If you're not familiar with

these terms, basically they mean " play nicely with others " or

" do unto others as you would have others do unto you.) The people that

are members of this group either have achalasia or have a family member or

friend with achalasia. Members share information regarding

things such as symptoms and symptom relief, diagnostic information,

treatment information, recommended

doctors/clinics, and personal experiences of what it's like to live with

achalasia. The group also shares a tremendous amount of caring and support.

Because it is so rare, achalasia is a very " lonely " disease -- most

people don't know anyone else with this disease. When family and friends

can't understand what you're going through, the people on this board CAN and

WILL understand, because they have " been there and done that " --

you are NOT alone in this!

The members of this group are

generally NOT healthcare providers (although in many cases the members in this

group are better educated about achalasia than the majority of healthcare

providers!) The messages on this forum are meant to share information

that we have found to be helpful in understanding, treating, and living with

this disease. It is hoped that this information may in

turn help others. This group is NOT intended to replace proper diagnosis and

treatment by qualified licensed physicians. Anyone who even suspects they (or

someone they know) have Achalasia should immediately contact a GI specialist

(Gastroenterologist, preferably one with a sub-specialty in swallowing

disorders or esophageal disorders) in order to be properly diagnosed. Please

do not delay in getting proper treatment, as Achalasia only gets worse with

time and any delay in treatment may cause irreversible damage to the

esophagus that lessens the chances of successful treatment.

Unless otherwise indicated as

being documented by experts (with appropriate references and/or links to the

original documentation), the information posted by

members of this forum is based on personal experience or opinion, and should

not be construed as being applicable to each and every case of achalasia. As

achalasia is a unique disease, it is also unique to each individual. What may

help one person may not help another. The symptoms that one person

experiences may be different from the experiences of another. It is therefore

recommended that before one tries anything mentioned on this site, they

discuss it with their attending physician to ensure there will be no

complications. All information (as with

any information posted on the internet)

should be taken with a large grain of salt (or salt substitute, if medically

required.)

There is an incredible amount of information

already contained within this Group website. It is recommended that

everyone educate themselves as much as possible about what achalasia is, how

it is diagnosed, and how it is treated. Because of the infrequent occurrence

of achalasia, most family doctors and general practitioners are not familiar

with it, and even many GI (gastrointestinal) specialists aren't well-versed

on the most up-to-date information that is

currently available. Therefore, it is crucial that everyone educate

themselves in order to make competent, informed decisions about

their own healthcare treatment choices.

In the " Links " section

(accessible through the link at the left-hand side of each page of the

website) there are links to hundreds of informational

websites. Some of these are broken down into folders by category, and some of

them are just posted alphabetically by title. If you have questions about

what achalasia is, check out the links in the folder titled,

" Descriptions of Achalasia/Dysphagia and How Diagnosed " , etc. There

is also information available in the

" Polls " and " Database " sections.

If you have questions about a

specific item, try doing a search in the archived messages. On the

" Messages " page there is a search box in the Headings bar at the

top of the message list. Type a keyword (such as " manometry " or

" chest pain " ) in the search box and will search through the

messages a couple hundred at a time, starting with the most recent posts. If

there is a reference to the searched keyword, will return a screen with

links to any message that contains that keyword. If there was no instance of

that keyword in the first couple hundred most recent messages, will

return a page stating such. To search the next couple hundred messages, click

on " next " on the search results page. To open a search result

message in a new window (so you don't lose the list of " hits " off

your search), simply " right click " on the message link and choose

Open in New Window and a new window will open with the message you selected.

If you see a reference to a specific message number in someone's message or

in a database (such as " see my history in message number XXXX " ),

there's another box in the Headings bar (just below the " search "

box) where you can enter the message number and go directly to that particular

message.

In order to post to the group, you

need to first " join " the group, which requires that you have a free

identity (screen name.) When you join the group, will by default

assign your email address (your-screen-name@...) to receive all

the group messages individually via email. You can change your email settings

at any time by using the " Edit My Membership " link on the upper

right side of any webpage. You may change the email address to any other

address you may have (which requires you to " verify " the address

[prove that it really exists and that you really want to receive the messages

there] by replying to an email that will send to the alternate

address.) [Please be aware that any address you use to post to the group will

be visible via the internet to the public and to other group members via

email.]

You can also change the frequency

with which you receive emails. " Individual Emails " means that each

time someone posts to the group via website or email, you will receive an

email containing that post. " Daily Digest " means that the day's

posts will accumulate into one big email, one message listed after another.

At the end of the day (or more often if there are more than 25 messages in

any given day), will send this one long email to your inbox. " No

Email " means just what it says -- no emails will be sent to you, and you

will have to read each message on the website's " Messages " page.

To post a new message to the

group, you may either type it out on the " Post " page of the group, or

you may send an email to achalasia .

To reply to an existing message,

you may either reply on the website, or send a reply via email. When replying

to a message, the " to " field will be to the GROUP address ( achalasia ) , not

to the individual person who posted the message to which you are replying. If

you wish to send a private message just to that one person, you will need to change

the " to " field to just that person's email address.

If your email program is set up to

automatically quote the original message when you reply to an email, please

edit out any excess material before sending your reply. This is particularly

important for people who are on " Digest " mode, as the quoted

material will be the whole entire 25-message email and not just the one

portion of the digest that you are wanting to comment upon.

If you have a file that you want

to share with the group, you may attach it to your email and it will be

distributed via 's Group email delivery to those who are on Individual

Email mode. However, no longer archives the attachments, so they are

not available to people on Web-Only or Daily Digest mode. For that reason,

you should also upload any attachment to the " Files " section (link

available from left side of any web page.) It is helpful if you title and

describe your file so that others will know what it contains.

" Document1 " is NOT a descriptive title.... " Questions to ask

your surgeon " gives a much better idea of what is contained inside the

file!

This group is provided as a free

service of , and it may experience " glitches " from time to

time that are beyond anyone's control. Samples of glitches are messages

'disappearing' after they are sent, messages posting on the website that

don't get sent via email, messages being delayed by several hours, or

messages arriving in a different order than they were sent. It doesn't happen

all the time, but it does occasionally happen, and there's not much that can

be done about it.

This group is a tremendous

resource to the members, and it is hoped that everyone will find the information to

be helpful. Please feel free to post any questions, worries/concerns, or

suggestions that you may have.

Welcome to the Achalasia Group!