Re: our group as a resource

[Guest guest]

Penny,

Early last year, when the group was discussing holding a conference, I

emailed Dr. Worman. (Sp?) He said he would be interested in speaking at a

conference if his lodging and expenses were paid for. Maybe I could try

contacting him again, to see if he would be interested in helping out with

the group.

Love,

[Guest guest]

Hi Penny,

I think it's a great idea! Ed sees Dr. Kaplan, in fact we just saw him

last week. Our next visit is in April. I'd be happy to provide him

with some information we might have. The only problem is Ed and I have

so much to ask him and so little time with the man (he is soooooo

booked up), we try and ask him all of our questions within the short

time we have with him (about 15 minutes). And he also examines him,

writes prescriptions and writes out Ed's blood tests from the last

visit for us (we see him every 3 months). Quite often I think of this

group while I'm there but Ed will warn me to save those questions until

the end if there's time because he has so much to discuss with him.

Although he is very patient and answers all of our questions, we always

feel that we can't afford to take up more of his time than we have to.

But he is very interested in the fact that there are groups like us out

here discussing PSC and having his name come up (he blushes at the

fact)!

If we had a summary of information that I could bring with me next time

I think it would be at least interesting to him. And I could ask if he

had any questions for us. Of course it would have to be after all of

Ed's questions! Ed and I have a great respect for him and we think he

has done a lot for the disease. I think it would be an honor to help

him if there's a way we could.

[Guest guest]

Group, I think this is a GREAT idea ..... so much valueable

information goes through here. A database like the one we have but

expanded would be useful; it would be much easier to reference some of

this " important " information.

Just my vote.

pr weller wrote:

original article:/group//?start=8417

There are two ways that we could offer information. We could expand on

our data base .....>

Thanks for your thoughts,

Penny

[Guest guest]

I sent a letter and our database to Dr. Kahn before he left to start up

a tx center on Long Island. I also suggested that he join our group. I

don't know what he did personally, but he did give the ifo about the

group to Dr. Donovan (Phil's new doctor) who passed it on the (Big

Woopie) and I'm glad he did that she's great and I'm sure we'll be a

help to her and I have a new friend.

Maybe when Dr. Kahn gets settled we'll hear from him. I know that he

has considered Dawn a referral. I think a lot of the doctors of our

group could learn something from some of the people in our group and

maybe their doctors. This disease has to be frustrating for them. I

know Phil's GI doctor told him that he was losing sleep worrying about

Phil when he was getting those continual infections. He's a sweet man.

Peg

[Guest guest]

Penny

I would be willing to participate but I don't think I know of anyone doing

research on PSC.

" guts and butts " is a riot!! Thanks for the laugh!

Dianne Arneill AIH/PSC/Lupus/Sjogren's

Dpa1228@...