Re: FW: Samters Fact Sheet

[Guest guest]

Ken, let's talk offline some more about it. Maybe people could help

in writing different sections, and I could edit it.

I think the online version is a fantastic idea as well.

Lori

>

> Lori, you are proposing something very profound and important.

>

> I had been thinking about putting together a basic document for

newcomers to

> the group, but your concept for the fact sheet would encompass

anything I

> had been thinking of, and I think it could be used for both

purposes. I'm

> sure it could be constructed so that an on-line version would have

hot html

> links, but still be readable as a printed brochure.

>

> What can I/we do to help?

>

> Ken West

>

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

> . . . snip . . .

> >

> > I really want to create a Samters fact sheet, in addition to the

group

> > brochure, that we can give to uneducated doctor's like Jessa's

doctor.

> > Jessa, I would tell your ENT to call Dr. son at Scripps or

Dr. Bosso

> > here in New York (I can get you his number) and consult with

those doctors

> > to find out what other treatments are being done for Samters.

There are

> > more treatments than just the prednisone and surgery. In fact,

in my mind,

> > those are the two most ineffective treatments and prednisone with

the most

> > side effects. But you know this already.

> >

> > Anyway, what I would like to do and I think I am going to start

writing it

> > soon is to create a Samters fact sheet WITH references that we

can give to

> > our doctors. I may ask for input from some doctors. If anyone

has the

> > brochure from Scripps who has been there recently can you

possibly make a

> > copy and send it to me? And basically any other printouts that

anyone has.

> >

> > I plan to summarize the symptoms, the underecognition of the

triad and its

> > associations with other illnesses such as depression, GERD, etc.

Also to

> > list the references about cross-sensitivity to Tylenol and the

fact that we

> > are unlikely to be cross-sensitive to COX-2 inhibitors. Then to

list the

> > currently available treatments, either FDA approved or off-label

and

> > experimental (the aspirin desensitizatoin is still unfortunatley

considered

> > experimental). Then perhaps on the back to have quotes from you

all, brief

> > ones, about what it is like living with Samters on a day to day

basis and

> > the commonalities we all have, to show them that we are not

freaks, that

> > there are more of this out there than just the one or two or

three patients

> > they've seen, and that we can educate them if they haven't been

able to find

> > out about it for themselves.

> >

> > That's my plan. I would then have it available for download or

even print

> > it out and send it out to whomever wants it to bring to their

doctors. My

> > goal would be to make it easy to read, quick, but on the doctor's

level so

> > they have an idea what are talking about.

> >

> > Lori

[Guest guest]

Ken, P.S., one thing that would be very helpful for me is if anyone

has access to a printer and could print out some of the references

and articles for me and send them to me to help in compiling them. I

stare at a computer screen at work for so many hours a day that I

usually have a hard time processing online information and need to

print things out to read them, but I'm in between printers at the

moment and maybe for a while.

I think it's very important to have references in the brochure/fact

sheet, concrete scientific references, to give it credibility. And I

would like to endeavor to make it as profesional as possible.

I thought about it a lot last night before I went to bed and I think

we could have two slightly different versions of it, both in print

and online. I would like the physician one to say something

like " Dear Health Care Provider, Your patient has been diagnosed as

having a syndrome sometimes called Samters syndrome, aspirin triad,

aspirin sensitive asthma or AIAR (can't remember what that standars

for right now!). It has recently been called AERD, which stands for

aspirin exacerbated respiratory disease.

The triad consists of .... etc.

anyway, let's talk more off line and if anyone else is interested

email me off group as well and we can work on it together.

Thanks

Lori

[Guest guest]

Another thing, if people off list could send me names, addresses,

phone numbers of doctors who are friendly and also know a lot about

this (like Dr. Kennedy, whoever that is, because I don't know who it

is ) and might be willing to look over our brochure or

contribute in some way. I don't think there would be any pay

involved, it would be strictly volunteer at this basis. But they are

also doctors I would like to contact when I form my Samters

Foundation in order to get a medical board.

I would not ask for a lot of their time and no expense would be

involved.

Lori

> Ken, P.S., one thing that would be very helpful for me is if anyone

> has access to a printer and could print out some of the references

> and articles for me and send them to me to help in compiling them.

I

> stare at a computer screen at work for so many hours a day that I

> usually have a hard time processing online information and need to

> print things out to read them, but I'm in between printers at the

> moment and maybe for a while.

>

> I think it's very important to have references in the brochure/fact

> sheet, concrete scientific references, to give it credibility. And

I

> would like to endeavor to make it as profesional as possible.

>

> I thought about it a lot last night before I went to bed and I

think

> we could have two slightly different versions of it, both in print

> and online. I would like the physician one to say something

> like " Dear Health Care Provider, Your patient has been diagnosed as

> having a syndrome sometimes called Samters syndrome, aspirin triad,

> aspirin sensitive asthma or AIAR (can't remember what that standars

> for right now!). It has recently been called AERD, which stands

for

> aspirin exacerbated respiratory disease.

>

> The triad consists of .... etc.

>

> anyway, let's talk more off line and if anyone else is interested

> email me off group as well and we can work on it together.

>

> Thanks

>

> Lori

[Guest guest]

Lori,

Do you not have a printer at home? I have one for you if you need it. I upgraded to a scanner printer. It only prints but it may help out a little.

Tami

Re: FW: Samters Fact Sheet

Ken, P.S., one thing that would be very helpful for me is if anyone has access to a printer and could print out some of the references and articles for me and send them to me to help in compiling them. I stare at a computer screen at work for so many hours a day that I usually have a hard time processing online information and need to print things out to read them, but I'm in between printers at the moment and maybe for a while.I think it's very important to have references in the brochure/fact sheet, concrete scientific references, to give it credibility. And I would like to endeavor to make it as profesional as possible.I thought about it a lot last night before I went to bed and I think we could have two slightly different versions of it, both in print and online. I would like the physician one to say something like "Dear Health Care Provider, Your patient has been diagnosed as having a syndrome sometimes called Samters syndrome, aspirin triad, aspirin sensitive asthma or AIAR (can't remember what that standars for right now!). It has recently been called AERD, which stands for aspirin exacerbated respiratory disease.The triad consists of .... etc. anyway, let's talk more off line and if anyone else is interested email me off group as well and we can work on it together. ThanksLori

[Guest guest]

I have a very nice Doctor. His name is Dr. Dean elli.

His address is 2750 Golf Road, Delafield, WI 53018. I can't tell you whether he would be interested or not, but I do know that he's trying very hard to find a solution to Samters. Since you are in the medical field would be very helpful.

You can either send me the typed up request and I could talk to him in person or you can send it directly and let him know I was the one who gave out his name.

Tami

Thanks for working so hard on this.

Re: FW: Samters Fact Sheet

Another thing, if people off list could send me names, addresses, phone numbers of doctors who are friendly and also know a lot about this (like Dr. Kennedy, whoever that is, because I don't know who it is ) and might be willing to look over our brochure or contribute in some way. I don't think there would be any pay involved, it would be strictly volunteer at this basis. But they are also doctors I would like to contact when I form my Samters Foundation in order to get a medical board.I would not ask for a lot of their time and no expense would be involved. Lori> Ken, P.S., one thing that would be very helpful for me is if anyone > has access to a printer and could print out some of the references > and articles for me and send them to me to help in compiling them. I > stare at a computer screen at work for so many hours a day that I > usually have a hard time processing online information and need to > print things out to read them, but I'm in between printers at the > moment and maybe for a while.> > I think it's very important to have references in the brochure/fact > sheet, concrete scientific references, to give it credibility. And I > would like to endeavor to make it as profesional as possible.> > I thought about it a lot last night before I went to bed and I think > we could have two slightly different versions of it, both in print > and online. I would like the physician one to say something > like "Dear Health Care Provider, Your patient has been diagnosed as > having a syndrome sometimes called Samters syndrome, aspirin triad, > aspirin sensitive asthma or AIAR (can't remember what that standars > for right now!). It has recently been called AERD, which stands for > aspirin exacerbated respiratory disease.> > The triad consists of .... etc. > > anyway, let's talk more off line and if anyone else is interested > email me off group as well and we can work on it together. > > Thanks> > Lori