Re: Fw: Samter Syndrome, I mean AERD !

[Guest guest]

While I appreciate Dr. son and what I have learned from his papers as

posted on the WWW, it appears he want's to keep us all to himself.

Of course, giving it a new name will be a big help (everything MUST be an

acronym these days).

Should we change the name of this group?

PS -- Lori -- I like your attitude.

regards,

Ken West

> From: " Lori Baur " <truelori@...>

> Reply-samters

> Date: Thu, 12 Sep 2002 16:59:42 -0400

> <samters >

> Subject: Fw: Samter Syndrome

>

>

> Well, Dr. son wrote back a response to the NORD guy (the rare disease

> database) that basically completely put a stop to us getting any help from

> NORD on this. I find the statistics that Dr. son quotes extremely

> hard to believe and I very frustrated that he would take this stance. Does

> anyone really believe that there are 2.5 million Samter's sufferers in the

> U.S.??? If there are, we should have some type of an organization. I just

> find it very very hard to believe. And if you can't tell, I'm a little

> angry. " World wide research is going rather well on this common disorder. "

> BULLSHIT it is. Where is the help for us then????

>

> Lori

>>

>>

>>> Dear , Samter's syndrome, now call aspirin exacerbated respiratory

>>> disease (AERD), is not a rare disease. The prevalence is 15% of all

>>> asthmatics or about 2.5 million people in the USA. It has a world wide

>>> pravalence of about 30 million people. I am not familiar with NORD with

>>> respect to what you do and why you do it. World wide research is going along

>>> rather well on this common disorder. I would need some convincing before I

>>> used up any of my limited time going further than the above.

>>>

>>> Sincerely

>>>

>>> D. son, MD

>>>

[Guest guest]

Oh Ken, you are so right on. I just got a bit duped by a doctor and am not

happy about it. Sometimes I think they should just let go of that damn God

syndrom...

> While I appreciate Dr. son and what I

> have learned from his papers as

> posted on the WWW, it appears he want's to keep

> us all to himself.

>

> Of course, giving it a new name will be a big

> help (everything MUST be an

> acronym these days).

> Should we change the name of this group?

>

> PS -- Lori -- I like your attitude.

>

> regards,

> Ken West

>

> > From: " Lori Baur "

> > Reply-samters

> > Date: Thu, 12 Sep 2002 16:59:42 -0400

> > To:

> > Subject: Fw: Samter Syndrome

> >

> >

> > Well, Dr. son wrote back a response to

> the NORD guy (the rare disease

> > database) that basically completely put a

> stop to us getting any help from

> > NORD on this. I find the statistics that Dr.

> son quotes extremely

> > hard to believe and I very frustrated that he

> would take this stance. Does

> > anyone really believe that there are 2.5

> million Samter's sufferers in the

> > U.S.??? If there are, we should have some

> type of an organization. I just

> > find it very very hard to believe. And if

> you can't tell, I'm a little

> > angry. " World wide research is going rather

> well on this common disorder. "

> > BULLSHIT it is. Where is the help for us

> then????

> >

> > Lori

> >>

> >>

> >>> Dear , Samter's syndrome, now call

> aspirin exacerbated respiratory

> >>> disease (AERD), is not a rare disease. The

> prevalence is 15% of all

> >>> asthmatics or about 2.5 million people in

> the USA. It has a world wide

> >>> pravalence of about 30 million people. I am

> not familiar with NORD with

> >>> respect to what you do and why you do it.

> World wide research is going along

> >>> rather well on this common disorder. I

> would need some convincing before I

> >>> used up any of my limited time going

> further than the above.

> >>>

> >>> Sincerely

> >>>

> >>> D. son, MD

> >>>

>

>

>