Re: Looking for feedback on a draft of a brochure on PSC Diagnosis

[Guest guest]

My

suggestions….

Under Symptoms:

Itching: “particularly

on soles of hands, feet or legs though it can occur” (when we met PSCer’s at Baylor, everyone

of them had the very same scars on their legs. Not just some scars, but tons of them. Would a poll help to see just where

people itch the most? Maybe they could number the places with

#1 (itching the most) then #2 etc?

Under Colonoscopy:

“The endoscope

is inserted and moved gently around the bends of the colon” I’d

remove though the anus (too graphic for me.)

Under Antibodies:

((On this section, I admit,

I’m not at all sure, but am interested in what others think.)) This group is plenty smart and very well

informed, but when Ken was first diagnosed (and those are the people we’re

trying to reach) this section would have been pretty difficult for me to understand. Can we maybe simplify it a little?

I really love the

whole idea of a brochure for those newly diagnosed. , you did an excellent job!!! Almost everyone

of us remembers all too vividly the day our doctors told us/loved ones we had

PSC. It was truly horrible. I understand adding/removing words

messes everything up, but……(always a but

with me huh?) Could you write something

somewhere that says this disease is not a death sentence or something like that. I believe

the first thing a newly diagnosed person needs to hear is something/anything reassuring

and hopeful. Great job !

Barb (Proud mom of Ken) in Texas - Together in the Fight, Whatever it Takes!

Son Ken (34) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @

Baylor in Dallas

[Guest guest]

My

suggestions….

Under Symptoms:

Itching: “particularly

on soles of hands, feet or legs though it can occur” (when we met PSCer’s at Baylor, everyone

of them had the very same scars on their legs. Not just some scars, but tons of them. Would a poll help to see just where

people itch the most? Maybe they could number the places with

#1 (itching the most) then #2 etc?

Under Colonoscopy:

“The endoscope

is inserted and moved gently around the bends of the colon” I’d

remove though the anus (too graphic for me.)

Under Antibodies:

((On this section, I admit,

I’m not at all sure, but am interested in what others think.)) This group is plenty smart and very well

informed, but when Ken was first diagnosed (and those are the people we’re

trying to reach) this section would have been pretty difficult for me to understand. Can we maybe simplify it a little?

I really love the

whole idea of a brochure for those newly diagnosed. , you did an excellent job!!! Almost everyone

of us remembers all too vividly the day our doctors told us/loved ones we had

PSC. It was truly horrible. I understand adding/removing words

messes everything up, but……(always a but

with me huh?) Could you write something

somewhere that says this disease is not a death sentence or something like that. I believe

the first thing a newly diagnosed person needs to hear is something/anything reassuring

and hopeful. Great job !

Barb (Proud mom of Ken) in Texas - Together in the Fight, Whatever it Takes!

Son Ken (34) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @

Baylor in Dallas

[Guest guest]

My

suggestions….

Under Symptoms:

Itching: “particularly

on soles of hands, feet or legs though it can occur” (when we met PSCer’s at Baylor, everyone

of them had the very same scars on their legs. Not just some scars, but tons of them. Would a poll help to see just where

people itch the most? Maybe they could number the places with

#1 (itching the most) then #2 etc?

Under Colonoscopy:

“The endoscope

is inserted and moved gently around the bends of the colon” I’d

remove though the anus (too graphic for me.)

Under Antibodies:

((On this section, I admit,

I’m not at all sure, but am interested in what others think.)) This group is plenty smart and very well

informed, but when Ken was first diagnosed (and those are the people we’re

trying to reach) this section would have been pretty difficult for me to understand. Can we maybe simplify it a little?

I really love the

whole idea of a brochure for those newly diagnosed. , you did an excellent job!!! Almost everyone

of us remembers all too vividly the day our doctors told us/loved ones we had

PSC. It was truly horrible. I understand adding/removing words

messes everything up, but……(always a but

with me huh?) Could you write something

somewhere that says this disease is not a death sentence or something like that. I believe

the first thing a newly diagnosed person needs to hear is something/anything reassuring

and hopeful. Great job !

Barb (Proud mom of Ken) in Texas - Together in the Fight, Whatever it Takes!

Son Ken (34) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @

Baylor in Dallas

[Guest guest]

Under Itching - don't make me get graphic, but nothing

is immune from itching. Inside the nostrils, in the

ear canal, the eyelids where you would be line on the

underside of the eye, the spot where the endoscope

enters for a colonoscopy, and a few other private

parts.

I had to chuckle at the 'anus' being too graphic. It

probably is, but with these major problems, I've

learned to just spit it out, I don't sugar-coat anything.

Cindy Baudoux-Northrup

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Under Itching - don't make me get graphic, but nothing

is immune from itching. Inside the nostrils, in the

ear canal, the eyelids where you would be line on the

underside of the eye, the spot where the endoscope

enters for a colonoscopy, and a few other private

parts.

I had to chuckle at the 'anus' being too graphic. It

probably is, but with these major problems, I've

learned to just spit it out, I don't sugar-coat anything.

Cindy Baudoux-Northrup

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Under Itching - don't make me get graphic, but nothing

is immune from itching. Inside the nostrils, in the

ear canal, the eyelids where you would be line on the

underside of the eye, the spot where the endoscope

enters for a colonoscopy, and a few other private

parts.

I had to chuckle at the 'anus' being too graphic. It

probably is, but with these major problems, I've

learned to just spit it out, I don't sugar-coat anything.

Cindy Baudoux-Northrup

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

***** KUDOS ****** TO YOU CINDY

The brochure is just a sugar coat to the very beginning of PSC !

It could be more descriptive but then again its a brochure how much

would fit in it ? If all of us put in some of our most descriptive

moments with PSC and the other stuff that came before and after...

WOW !!! It would be a biography " IN THE LIFE OF PSC IN OTHERS ! "

Any ways for those of you that answered my question on " ALL MY

CLOTHES ARE BOTHERING ME! " Thank you so much ! I can only imagine for

those of you that live up north ! Well here is to leather sandals

tanks and shorts !

you all have a absolute wonderful day ! I'm about to start my work

day !

marisol

>

>

> Under Itching - don't make me get graphic, but nothing

> is immune from itching. Inside the nostrils, in the

> ear canal, the eyelids where you would be line on the

> underside of the eye, the spot where the endoscope

> enters for a colonoscopy, and a few other private

> parts.

>

> I had to chuckle at the 'anus' being too graphic. It

> probably is, but with these major problems, I've

> learned to just spit it out, I don't sugar-coat anything.

>

> Cindy Baudoux-Northrup

>

>

>

______________________________________________________________________

______________

> Be a better friend, newshound, and

> know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

[Guest guest]

***** KUDOS ****** TO YOU CINDY

The brochure is just a sugar coat to the very beginning of PSC !

It could be more descriptive but then again its a brochure how much

would fit in it ? If all of us put in some of our most descriptive

moments with PSC and the other stuff that came before and after...

WOW !!! It would be a biography " IN THE LIFE OF PSC IN OTHERS ! "

Any ways for those of you that answered my question on " ALL MY

CLOTHES ARE BOTHERING ME! " Thank you so much ! I can only imagine for

those of you that live up north ! Well here is to leather sandals

tanks and shorts !

you all have a absolute wonderful day ! I'm about to start my work

day !

marisol

>

>

> Under Itching - don't make me get graphic, but nothing

> is immune from itching. Inside the nostrils, in the

> ear canal, the eyelids where you would be line on the

> underside of the eye, the spot where the endoscope

> enters for a colonoscopy, and a few other private

> parts.

>

> I had to chuckle at the 'anus' being too graphic. It

> probably is, but with these major problems, I've

> learned to just spit it out, I don't sugar-coat anything.

>

> Cindy Baudoux-Northrup

>

>

>

______________________________________________________________________

______________

> Be a better friend, newshound, and

> know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

[Guest guest]

***** KUDOS ****** TO YOU CINDY

The brochure is just a sugar coat to the very beginning of PSC !

It could be more descriptive but then again its a brochure how much

would fit in it ? If all of us put in some of our most descriptive

moments with PSC and the other stuff that came before and after...

WOW !!! It would be a biography " IN THE LIFE OF PSC IN OTHERS ! "

Any ways for those of you that answered my question on " ALL MY

CLOTHES ARE BOTHERING ME! " Thank you so much ! I can only imagine for

those of you that live up north ! Well here is to leather sandals

tanks and shorts !

you all have a absolute wonderful day ! I'm about to start my work

day !

marisol

>

>

> Under Itching - don't make me get graphic, but nothing

> is immune from itching. Inside the nostrils, in the

> ear canal, the eyelids where you would be line on the

> underside of the eye, the spot where the endoscope

> enters for a colonoscopy, and a few other private

> parts.

>

> I had to chuckle at the 'anus' being too graphic. It

> probably is, but with these major problems, I've

> learned to just spit it out, I don't sugar-coat anything.

>

> Cindy Baudoux-Northrup

>

>

>

______________________________________________________________________

______________

> Be a better friend, newshound, and

> know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

[Guest guest]

Dave

I took a look at it and I wonder if two brochures might make more sense -- here

is my

thinking:

There is a TON of information to digest, and I know when I was first Dx'ed, I

would have

loved a quick and dirty, " don't go making funeral arrangements just yet " and

" here is what

you can expect in the beginning " type info. I think expressing via quotes from

some of the

people here the shock, disbelief and downright horror most of us felt at first,

and that

feeling that way is normal and OK.

I can tell you that when I did my research (before I found this group and got a

dose of

" real life " info), I didn't meet the " norm " at all-- I'm female and was 32. I

was terrified that

I'd be dead before 40. I think expressing that there is no " norm, " that the

disease strikes

young and old, men and women, and far too many children. Explain what the

standard

tests and treatments are, that each case is individual. And then have a second

brochure

that goes into the nitty gritty detail of the disease. This level of info would

have been over

my head initially, and I'd been dealing with GIs for 16 years already when I was

DX'ed with

PSC. I think some reassurance will go a long way toward making a very useful

brochure

that will be read by your intended audience.

HTH,

Colleen

>

> Dear All;

>

> I would appreciate any feedback (positive or negative) on a draft of a

> brochure on " PSC Diagnosis " , available for download at:

>

> http://www.pscpartners.org/PSCDiagnosis.pdf

>

> Thank you,

>

> Dave R.

> (father of (22); PSC 07/03; UC 08/03)

>

[Guest guest]

Dave

I took a look at it and I wonder if two brochures might make more sense -- here

is my

thinking:

There is a TON of information to digest, and I know when I was first Dx'ed, I

would have

loved a quick and dirty, " don't go making funeral arrangements just yet " and

" here is what

you can expect in the beginning " type info. I think expressing via quotes from

some of the

people here the shock, disbelief and downright horror most of us felt at first,

and that

feeling that way is normal and OK.

I can tell you that when I did my research (before I found this group and got a

dose of

" real life " info), I didn't meet the " norm " at all-- I'm female and was 32. I

was terrified that

I'd be dead before 40. I think expressing that there is no " norm, " that the

disease strikes

young and old, men and women, and far too many children. Explain what the

standard

tests and treatments are, that each case is individual. And then have a second

brochure

that goes into the nitty gritty detail of the disease. This level of info would

have been over

my head initially, and I'd been dealing with GIs for 16 years already when I was

DX'ed with

PSC. I think some reassurance will go a long way toward making a very useful

brochure

that will be read by your intended audience.

HTH,

Colleen

>

> Dear All;

>

> I would appreciate any feedback (positive or negative) on a draft of a

> brochure on " PSC Diagnosis " , available for download at:

>

> http://www.pscpartners.org/PSCDiagnosis.pdf

>

> Thank you,

>

> Dave R.

> (father of (22); PSC 07/03; UC 08/03)

>

[Guest guest]

Dave

I took a look at it and I wonder if two brochures might make more sense -- here

is my

thinking:

There is a TON of information to digest, and I know when I was first Dx'ed, I

would have

loved a quick and dirty, " don't go making funeral arrangements just yet " and

" here is what

you can expect in the beginning " type info. I think expressing via quotes from

some of the

people here the shock, disbelief and downright horror most of us felt at first,

and that

feeling that way is normal and OK.

I can tell you that when I did my research (before I found this group and got a

dose of

" real life " info), I didn't meet the " norm " at all-- I'm female and was 32. I

was terrified that

I'd be dead before 40. I think expressing that there is no " norm, " that the

disease strikes

young and old, men and women, and far too many children. Explain what the

standard

tests and treatments are, that each case is individual. And then have a second

brochure

that goes into the nitty gritty detail of the disease. This level of info would

have been over

my head initially, and I'd been dealing with GIs for 16 years already when I was

DX'ed with

PSC. I think some reassurance will go a long way toward making a very useful

brochure

that will be read by your intended audience.

HTH,

Colleen

>

> Dear All;

>

> I would appreciate any feedback (positive or negative) on a draft of a

> brochure on " PSC Diagnosis " , available for download at:

>

> http://www.pscpartners.org/PSCDiagnosis.pdf

>

> Thank you,

>

> Dave R.

> (father of (22); PSC 07/03; UC 08/03)

>

[Guest guest]

I would second all of Barb's suggestions.

And most of all Thanks, !

Don

Please be a blood/organ donor

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

I would second all of Barb's suggestions.

And most of all Thanks, !

Don

Please be a blood/organ donor

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Dave,

I read it. It is well written. It is concise, easy to follow for the lay person.

One symptom that many of us had was the night sweats. It was a very puzzling

symptom for me. I was dx concurrently with UC, so I was also suffering from

bloody diarrhea. I dn't know that I would change a thing though. Well, done.

Cheryl ID PSC/AIH/UC, etc.

Looking for feedback on a draft of a brochure on PSC

Diagnosis

> Dear All;

>

> I would appreciate any feedback (positive or negative) on a draft of a

> brochure on " PSC Diagnosis " , available for download at:

>

> http://www.pscpartners.org/PSCDiagnosis.pdf

>

> Thank you,

>

> Dave R.

> (father of (22); PSC 07/03; UC 08/03)

>

>

>

[Guest guest]

Dave,

I read it. It is well written. It is concise, easy to follow for the lay person.

One symptom that many of us had was the night sweats. It was a very puzzling

symptom for me. I was dx concurrently with UC, so I was also suffering from

bloody diarrhea. I dn't know that I would change a thing though. Well, done.

Cheryl ID PSC/AIH/UC, etc.

Looking for feedback on a draft of a brochure on PSC

Diagnosis

> Dear All;

>

> I would appreciate any feedback (positive or negative) on a draft of a

> brochure on " PSC Diagnosis " , available for download at:

>

> http://www.pscpartners.org/PSCDiagnosis.pdf

>

> Thank you,

>

> Dave R.

> (father of (22); PSC 07/03; UC 08/03)

>

>

>

[Guest guest]

Dave,

I read it. It is well written. It is concise, easy to follow for the lay person.

One symptom that many of us had was the night sweats. It was a very puzzling

symptom for me. I was dx concurrently with UC, so I was also suffering from

bloody diarrhea. I dn't know that I would change a thing though. Well, done.

Cheryl ID PSC/AIH/UC, etc.

Looking for feedback on a draft of a brochure on PSC

Diagnosis

> Dear All;

>

> I would appreciate any feedback (positive or negative) on a draft of a

> brochure on " PSC Diagnosis " , available for download at:

>

> http://www.pscpartners.org/PSCDiagnosis.pdf

>

> Thank you,

>

> Dave R.

> (father of (22); PSC 07/03; UC 08/03)

>

>

>

[Guest guest]

I'll just tell my beginning story for the newcomers

since my initial introduction to this site.

When first dx, it was through a phone conversation

with my GI doctor, " Cindy, your liver enzymes are

elevated and this is not good, you will need a liver

transplant. "

SHOCK! No explanation of what the disease was, how I

got it, or WHEN I needed a transplant. So, I freaked

out. Went to the library and plummeted into a deep

depression thinking I was going to die any day now.

Then I found this site, I was eager for

information...or a better word is HOPE! What I

encountered was a major discussion thread about GTO's.

I wanted to SCREAM, STOP....how can the world

continue on with ME having this dreaded disease.

After a few blunt words, I believe from Barb (bless

her heart) she let me know that the world doesn't stop

AND more importantly my life needs to continue as

close to normal as possible.

I have gained friends here and a deep appreciation for

the information and opinions on this site.

I did not pay much attention to the more progressed

symptoms....I figured that I would deal with each

symptom as they popped up. Now I have worked up to,

just before transplant and what will happen

afterwards.

I think as the disease progresses you have to open up

to the hard-core PSC stuff, but until then, just deal

with the " what is, and what do I have to deal with

right now! "

I was just punning about the graphic descriptions in

the brochure.

And Barb,if I have never told you this, THANK YOU for

all the information you share with us.

Cindy Baudoux-Northrup

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

I'll just tell my beginning story for the newcomers

since my initial introduction to this site.

When first dx, it was through a phone conversation

with my GI doctor, " Cindy, your liver enzymes are

elevated and this is not good, you will need a liver

transplant. "

SHOCK! No explanation of what the disease was, how I

got it, or WHEN I needed a transplant. So, I freaked

out. Went to the library and plummeted into a deep

depression thinking I was going to die any day now.

Then I found this site, I was eager for

information...or a better word is HOPE! What I

encountered was a major discussion thread about GTO's.

I wanted to SCREAM, STOP....how can the world

continue on with ME having this dreaded disease.

After a few blunt words, I believe from Barb (bless

her heart) she let me know that the world doesn't stop

AND more importantly my life needs to continue as

close to normal as possible.

I have gained friends here and a deep appreciation for

the information and opinions on this site.

I did not pay much attention to the more progressed

symptoms....I figured that I would deal with each

symptom as they popped up. Now I have worked up to,

just before transplant and what will happen

afterwards.

I think as the disease progresses you have to open up

to the hard-core PSC stuff, but until then, just deal

with the " what is, and what do I have to deal with

right now! "

I was just punning about the graphic descriptions in

the brochure.

And Barb,if I have never told you this, THANK YOU for

all the information you share with us.

Cindy Baudoux-Northrup

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

I'll just tell my beginning story for the newcomers

since my initial introduction to this site.

When first dx, it was through a phone conversation

with my GI doctor, " Cindy, your liver enzymes are

elevated and this is not good, you will need a liver

transplant. "

SHOCK! No explanation of what the disease was, how I

got it, or WHEN I needed a transplant. So, I freaked

out. Went to the library and plummeted into a deep

depression thinking I was going to die any day now.

Then I found this site, I was eager for

information...or a better word is HOPE! What I

encountered was a major discussion thread about GTO's.

I wanted to SCREAM, STOP....how can the world

continue on with ME having this dreaded disease.

After a few blunt words, I believe from Barb (bless

her heart) she let me know that the world doesn't stop

AND more importantly my life needs to continue as

close to normal as possible.

I have gained friends here and a deep appreciation for

the information and opinions on this site.

I did not pay much attention to the more progressed

symptoms....I figured that I would deal with each

symptom as they popped up. Now I have worked up to,

just before transplant and what will happen

afterwards.

I think as the disease progresses you have to open up

to the hard-core PSC stuff, but until then, just deal

with the " what is, and what do I have to deal with

right now! "

I was just punning about the graphic descriptions in

the brochure.

And Barb,if I have never told you this, THANK YOU for

all the information you share with us.

Cindy Baudoux-Northrup

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Hi Dave,

In the first paragraph under " Where Can I Find Support and

Information? " you're missing an 'n' in the word 'joining'.

Even after a (very minimal) bit of experience with PSC, I've gotta

say that the Antibodies section reads like Greek to me... And in the

Liver Biopsy and Histology section I understood it all until the

technical descriptions of each stage of PSC. Maybe this is my brief

experience with the disease showing, but all those technical terms

are Greek to me as well. Wondering if someone reading the brochure

might just gloss over all of that....?

HTH,

Genevieve

UC 1983, J-Pouch 1999, PSC 12/07

>

> Dear All;

>

> I would appreciate any feedback (positive or negative) on a draft

of a

> brochure on " PSC Diagnosis " , available for download at:

>

> http://www.pscpartners.org/PSCDiagnosis.pdf

>

> Thank you,

>

> Dave R.

> (father of (22); PSC 07/03; UC 08/03)

>

[Guest guest]

Hi Dave,

In the first paragraph under " Where Can I Find Support and

Information? " you're missing an 'n' in the word 'joining'.

Even after a (very minimal) bit of experience with PSC, I've gotta

say that the Antibodies section reads like Greek to me... And in the

Liver Biopsy and Histology section I understood it all until the

technical descriptions of each stage of PSC. Maybe this is my brief

experience with the disease showing, but all those technical terms

are Greek to me as well. Wondering if someone reading the brochure

might just gloss over all of that....?

HTH,

Genevieve

UC 1983, J-Pouch 1999, PSC 12/07

>

> Dear All;

>

> I would appreciate any feedback (positive or negative) on a draft

of a

> brochure on " PSC Diagnosis " , available for download at:

>

> http://www.pscpartners.org/PSCDiagnosis.pdf

>

> Thank you,

>

> Dave R.

> (father of (22); PSC 07/03; UC 08/03)

>

[Guest guest]

Hi Dave,

In the first paragraph under " Where Can I Find Support and

Information? " you're missing an 'n' in the word 'joining'.

Even after a (very minimal) bit of experience with PSC, I've gotta

say that the Antibodies section reads like Greek to me... And in the

Liver Biopsy and Histology section I understood it all until the

technical descriptions of each stage of PSC. Maybe this is my brief

experience with the disease showing, but all those technical terms

are Greek to me as well. Wondering if someone reading the brochure

might just gloss over all of that....?

HTH,

Genevieve

UC 1983, J-Pouch 1999, PSC 12/07

>

> Dear All;

>

> I would appreciate any feedback (positive or negative) on a draft

of a

> brochure on " PSC Diagnosis " , available for download at:

>

> http://www.pscpartners.org/PSCDiagnosis.pdf

>

> Thank you,

>

> Dave R.

> (father of (22); PSC 07/03; UC 08/03)

>

[Guest guest]

Under Common Symptoms:

The only thing I'd note is that many report vomiting with cholangitis episodes

(I've not), and many report pale stools/dark urine (I have).

Under Antibodies:

I can't remember any discussion on antibodies - either at initial diagnosis or

followup at Mayo (but I may have not been paying attention either!).

Under Colonoscopy:

A quick look at the internet descriptions (wrt anus) shows about an equal

division between the use of anus, rectum and no mention.

In conclusion ----- I wish I'd had this 8 years ago!!!!!!! Great job!

Arne

Dear All;

I would appreciate any feedback (positive or negative) on a draft of a

brochure on " PSC Diagnosis " , available for download at:

http://www.pscpartners.org/PSCDiagnosis.pdf

[Guest guest]

Under Common Symptoms:

The only thing I'd note is that many report vomiting with cholangitis episodes

(I've not), and many report pale stools/dark urine (I have).

Under Antibodies:

I can't remember any discussion on antibodies - either at initial diagnosis or

followup at Mayo (but I may have not been paying attention either!).

Under Colonoscopy:

A quick look at the internet descriptions (wrt anus) shows about an equal

division between the use of anus, rectum and no mention.

In conclusion ----- I wish I'd had this 8 years ago!!!!!!! Great job!

Arne

Dear All;

I would appreciate any feedback (positive or negative) on a draft of a

brochure on " PSC Diagnosis " , available for download at:

http://www.pscpartners.org/PSCDiagnosis.pdf