Re: Sharing the newsletter

[Guest guest]

Hi ;

I look forward to Suzanne's GI's crtique of the newsletter. There is

certainly no intent to spread invalid information. But it would be good

to have some feedback. I'm curious, did Suzanne's GI give you any

literature on PSC? My impression has been that patients and care-givers

are pretty much left to their own devices when it comes to finding

information on this disease.

Best regards,

Dave

(father of (19); PSC 07/03; UC 08/03)

[Guest guest]

, that's great. Thanks for helping to spread the word.

By the way, Dr. Lindor at Mayo thought our newsletter was very

professional.

Lee

> Suzanne had a doctor’s appointment recently with her GI and I gave her

> the newsletter, she was very interested in the group, the history of

> the group and people’s involvement. I really like this woman – she

> said that she would read the newsletter and give me feedback on it,

> she’d let me know if there were things in there that were

> contradictory to her understanding of PSC. She stated her purpose as

> making sure people are spreading valid information. I thought it was

> great because of two things – I do believe she will read it with a

> critical eye and I am quite sure she will be nothing be impressed. I

> also liked this approach because it made me feel like she was really

> advocating for us (although in this case we don’t need it!). She also

> stated that if she agrees with the information she’ asked permission

> to share it with other pediatric patients with PSC that are seen at

> Children’s.

>

> The word is getting out there folks – I again want to thank all of you

> that have made this happen.

>

> LINDA

> (Mom of Suzanne, 15; UC, 1/04; PSC 3/04)

> -----Original Message-----

> Dear Judy;

> Some members of the group are

> mailing it to their hepatologists, who are in turn making it

> available to their patients.

> Dave

> (father of (19); PSC 07/03; UC 08/03)

>

>

> Keep up the good work and May God Bless you for your hard work.

> > Judy wife of Ron - diagnosed with PSC 2-01

>

>

>

>

>

[Guest guest]

,

You are absolute right. We got very little information from our doctors

when Ron was diagnosed. I can remember I was like a wild person trying to

find out information. Thank goodness for this group. We have an

appointment at on June 8 so I think I will take a copy of the

newletter down to them and see what they think. It would be a wonderful

resource for their patients.

Judy in Illinois (Husband Ron - PSC 2/01)

My impression has been that patients and care-givers

>are pretty much left to their own devices when it comes to finding

>information on this disease.

>

>Best regards,

>

>Dave

>(father of (19); PSC 07/03; UC 08/03)

>

>

>

>

>

>

>

>

>

[Guest guest]

Dave,

I do hope that I wrote my post in a way

that did not indicate that the Dr. was assuming the newsletter was written in a

way that was sharing misinformation, she offered her critique in a helpful

manner. I will definitely share with you as soon as I hear from her.

At initial diagnosis we had a different

GI, he did not share any information on PSC at all, he was somewhat dismissive

and kept stating that her liver enzymes were doing great. Our new GI is taking

a different approach and discussed with me different heps. that we could see if

I wanted a “second opinion”. The discussion was whether we should

go to an adult hep or a pediatric hep. Since Suzanne is 16 I chose the adult

hep (and this is the same office that took such wonderful care of Joanne’s

son Todd). My information on PSC first came from my own frustrating and frantic

research, then from this ever so wise group. As I said in my post, Suzanne’s

GI did ask permission to share the newsletter (once it met her approval!) with

other patients in her office with PSC. A great step in the right direction. I

think that if grant or foundation funding is ever sought, stories from these GI’s

who are using the newsletter to support their own practices may support the

importance of continuing this group.

I hope continues to do well; is he

home for summer break?

LINDA

(Mom of Suzanne, 16; UC, 1/04; PSC 3/04)

-----Original Message-----

There

is certainly no intent to spread invalid information. But it would be good

to have some feedback.

I'm curious, did Suzanne's GI give you any

literature on PSC?

Dave

[Guest guest]

I wish I would have know that it already received Dr. Lindor's " approval " -

it would have been great to share that with Dr. Harpavat!

LINDA

(Mom of Suzanne, 16; UC, 1/04; PSC 3/04)

-----Original Message-----

, that's great. Thanks for helping to spread the word.

By the way, Dr. Lindor at Mayo thought our newsletter was very

professional.

Lee

[Guest guest]

Dear ;

No problem! I'm extremely glad that you have a GI who is supportive

and interested, and who will be looking out for Suzanne's (and her

other patient's) best interests.

One of my reasons for asking whether Suzanne's GI gave you any

literature on PSC, was .... do you think she might be interested in

writing a column for a future issue of the newsletter?

is doing well thank you; he's finishing up a project at

college and then will be heading to Cornell University for a summer

internship beginning the first week of June.

I hope that Suzanne is well.

Best regards,

Dave R.

[Guest guest]

,

It wouldn't hurt to tell Dr. Harpavat anyway the next time that you see

him.

> I wish I would have know that it already received Dr. Lindor's

> " approval " -

> it would have been great to share that with Dr. Harpavat!

>

> LINDA

> (Mom of Suzanne, 16; UC, 1/04; PSC 3/04)

>

> -----Original Message-----

>

>

> , that's great. Thanks for helping to spread the word.

> By the way, Dr. Lindor at Mayo thought our newsletter was very

> professional.

> Lee

>

>

>

>

>

[Guest guest]

-----Original Message-----

One of my reasons for asking whether Suzanne's GI gave you any

literature on PSC, was .... do you think she might

be interested in

writing a column for a future issue of the

newsletter?

Dave R.

----------------------------------------------------------------

Dave,

It sounds like is doing great, what

a wonderful time of life and to be experiencing it in good health is a true

blessing. I would love to talk to Dr. Harpavat about writing a column for a

future newsletter, are there any guidelines etc? I would love for her to share

the information she has on her study and bone density, something I think this group

might be interested in … but you can tell me!

In terms of the CD, I can send a check; I

was just wondering about PayPal, I didn’t want to get things confused

with the fundraising via PayPal. I think I have gotten so use to using the computer

for paying bills etc. I rarely write checks anymore! I am even wondering where

in the world we put those darn postage stamps !

LINDA

(Mom of Suzanne, 16; UC, 1/04; PSC 3/04)

PS – I am trying to follow the posting guidelines, how am I doing

<smile> ?

[Guest guest]

,

I would be very interested in Dr. Harpavat's study on bone density.

Todd was diagnosed with osteoporosis in 2002. I hope she will share

that study with us.

Joanne (mom of Todd, 19, psc 12/01, crohns 1/02, tx twice 12/03 and

living live to the fullest in 05)

wrote:

I would love for her to share the information she has on her study

and bone density, something I think this group might be interested

in .