Re: Organizational request

February 23, 2008

Hi Tina,

We do try to put " PG " in the subject line when we are talking about PG

specifically, but may not always remember.

It's important to have a descriptive subject line as it is also the

key to searching our site's messages archives.

If something is off topic we write " OT " in the subject line and you

may skip or delete it.

How did the group become a combined EN/PG group? Great question! When

the group was set up in July 2003 I didn't know anything about PG.

Then I met Jeff and he explained that he had PG. Many people who have

PG once had the less serious EN. People with CD can get either,

although PG is much more rare than EN. Well, it just made sense to me

to include PG in our group. Those with EN need to be aware of PG

symptoms before they get out of hand. Anyone with EN that starts to

blister and ulcerate is not dealing with garden variety EN any longer.

Those with PG have so much to offer those of us with EN. As bad as EN

is, PG is so many times worse. We are all dealing with a rare disorder

that affects mainly the legs, is painful and can disrupt our lives,

and is often associated with another serious conditions like CD,

Sarc., or other AI disorders. The combined EN/PG group has proven to

be a nice mix. Talking about both EN and PG has never been a problem.

Our rarer PG members need a good support group and it is our privilege

to provide it.

We probably could have called ourselves the " EN-PG Group " , but the EN

Group was already set up and so we kept the name and mentioned PG in

the Group's purpose. As members have gotten to know, care for, and

support each other, the lines between EN and PG blur.

Enjoy the rest of the weekend, Everyone!

Love,

idio. EN '68

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