Re: I'M REALLY PISSED NOW!!

[Guest guest]

I wonder if it's possible that these new members are family members who are becoming aware of how to get involved? Although, PSC is a rare disease this site is designed for PSC patients and family members world wide... I'd like to think that this site as well as PSC Partners is continuing to reach PSC patients.

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[Guest guest]

I wonder if it's possible that these new members are family members who are becoming aware of how to get involved? Although, PSC is a rare disease this site is designed for PSC patients and family members world wide... I'd like to think that this site as well as PSC Partners is continuing to reach PSC patients.

Save money by eating out! Find great dining coupons in your area.

[Guest guest]

One of the things that surprised me is (proportionately) how many

pediatric patients are represented here and on the PSCMoms site - in

addition to being rare, this is demographically a disease that hits 40

year old men. I would like to hope that part of what is happening isn't that the disease is becoming more common - but that doctors are becoming more aware of it, and are catching it earlier (With the success of the limited pediatric vancomycin studies, it sounds like early diagnosis might be key to effectively controlling it). I know I pushed my daughter's GI doc to do periodic liver and kidney function tests (because that is what was recommended in connection with the medication she was using). I saw a reference to increased testing for UC patients not because of medication concerns but because the strong ovelap in diseases. May be doctors are actually listening. My daughter would likely have been diagnosed 4 years ago, had her doctor been doing liver function tests (or even if his periodic visits in connection with treating her UC had included at least asking if she was experiencing symptoms known to be related to

liver disease - like itching.) , Mom to 18 yo daughter UC 6/95, PSC 3/09To: Sent: Monday, April 6, 2009 12:24:29 PMSubject: Re: I'M REALLY PISSED NOW!!

I wonder if it's possible that these new members are family members who are becoming aware of how to get involved? Although, PSC is a rare disease this site is designed for PSC patients and family members world wide... I'd like to think that this site as well as PSC Partners is continuing to reach PSC patients.

Save money by eating out! Find great dining coupons in your area.

[Guest guest]

One of the things that surprised me is (proportionately) how many

pediatric patients are represented here and on the PSCMoms site - in

addition to being rare, this is demographically a disease that hits 40

year old men. I would like to hope that part of what is happening isn't that the disease is becoming more common - but that doctors are becoming more aware of it, and are catching it earlier (With the success of the limited pediatric vancomycin studies, it sounds like early diagnosis might be key to effectively controlling it). I know I pushed my daughter's GI doc to do periodic liver and kidney function tests (because that is what was recommended in connection with the medication she was using). I saw a reference to increased testing for UC patients not because of medication concerns but because the strong ovelap in diseases. May be doctors are actually listening. My daughter would likely have been diagnosed 4 years ago, had her doctor been doing liver function tests (or even if his periodic visits in connection with treating her UC had included at least asking if she was experiencing symptoms known to be related to

liver disease - like itching.) , Mom to 18 yo daughter UC 6/95, PSC 3/09To: Sent: Monday, April 6, 2009 12:24:29 PMSubject: Re: I'M REALLY PISSED NOW!!

I wonder if it's possible that these new members are family members who are becoming aware of how to get involved? Although, PSC is a rare disease this site is designed for PSC patients and family members world wide... I'd like to think that this site as well as PSC Partners is continuing to reach PSC patients.

Save money by eating out! Find great dining coupons in your area.

[Guest guest]

>>>>

I'd like to think that this site as well as PSC Partners is

continuing to reach PSC patients.

That’s exactly what

I said.

Barb in Texas - Together in the Fight - Whatever it

Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 &

6/30 2007 @ Baylor/Dallas

[Guest guest]

>I agree that we need a better treatment strategy and a cure as soon as

possible. I have to note, though, that I made a small gift online with Paypal

almost two months ago and still have not received a receipt in the mail. I work

for a non-profit, and we always send receipts within at least a week. I don't

know if anyone else here has had the same experience.

> Have you signed in to the Yahoo Group page lately? 8 new members in 7

> days! That's unbelievable. I'm thrilled the new members are finding

> us, our group is a definite life-line on-line for PSCer's but come on,

> this is supposed to be a *^~`* rare disease!

>

> We have to do something to find a decent & successful treatment or a

> cure, and the sooner the better!

>

> I don't have the time (like last year) to privately send you a note

> about Ricky's upcoming Birthday (April 10th). So lets get busy and send

> her a birthday card (with money in it - ANY amount will help). Don't

> feel motivated to do it, or would rather sit back and procrastinate?

> Log on to the Yahoo Group site and look through the photo section, then

> look through the " In Memory " section. Those are our friends and fellow

> PSCer's! People who have lost the fight against PSC, we have to carry

> on for them! I talked to Ruth this past weekend, the pain of losing her

> son is still so strong I don't know how she carries on. I don't want to

> see another mother face that same fate and yet I know more will. I know

> times are tough, Ken's medical bills aren't fun either, but do we have a

> choice? If we don't fight this disease, who will....?

>

> Send a check made out to PSC Partners Seeking a Cure:

>

> PSC Partners Seeking a Cure

> 5237 So. Kenton Way

> Englewood, CO 80111

>

> Barb in Texas - Together in the Fight - Whatever it Takes!

> Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas

>

[Guest guest]

How fun - we can all see how many birthday cards can arrive in Ricky's mailbox in one day (or two or three days!). Maybe they will have to deliver the cards in a big box? Wouldn't that be fun!

Ricky - if you share your age we can try to send at least 10 times that many cards and donations towards treatment and or a cure!!!!!

Joanne H

(, Ca)

-----Original Message-----From: [mailto: ]On Behalf Of Barb HenshawSent: Monday, April 06, 2009 8:45 AMTo: Subject: I'M REALLY PISSED NOW!!

We have to do something to find a decent & successful treatment or a cure, and the sooner the better!

I don’t have the time (like last year) to privately send you a note about Ricky’s upcoming Birthday (April 10th). So lets get busy and send her a birthday card (with money in it – ANY amount will help).

Send a check made out to PSC Partners Seeking a Cure:

PSC Partners Seeking a Cure5237 So. Kenton WayEnglewood, CO 80111

Barb in Texas - Together in the Fight - Whatever it Takes!

..

[Guest guest]

How fun - we can all see how many birthday cards can arrive in Ricky's mailbox in one day (or two or three days!). Maybe they will have to deliver the cards in a big box? Wouldn't that be fun!

Ricky - if you share your age we can try to send at least 10 times that many cards and donations towards treatment and or a cure!!!!!

Joanne H

(, Ca)

-----Original Message-----From: [mailto: ]On Behalf Of Barb HenshawSent: Monday, April 06, 2009 8:45 AMTo: Subject: I'M REALLY PISSED NOW!!

We have to do something to find a decent & successful treatment or a cure, and the sooner the better!

I don’t have the time (like last year) to privately send you a note about Ricky’s upcoming Birthday (April 10th). So lets get busy and send her a birthday card (with money in it – ANY amount will help).

Send a check made out to PSC Partners Seeking a Cure:

PSC Partners Seeking a Cure5237 So. Kenton WayEnglewood, CO 80111

Barb in Texas - Together in the Fight - Whatever it Takes!

..

[Guest guest]

How fun - we can all see how many birthday cards can arrive in Ricky's mailbox in one day (or two or three days!). Maybe they will have to deliver the cards in a big box? Wouldn't that be fun!

Ricky - if you share your age we can try to send at least 10 times that many cards and donations towards treatment and or a cure!!!!!

Joanne H

(, Ca)

-----Original Message-----From: [mailto: ]On Behalf Of Barb HenshawSent: Monday, April 06, 2009 8:45 AMTo: Subject: I'M REALLY PISSED NOW!!

We have to do something to find a decent & successful treatment or a cure, and the sooner the better!

I don’t have the time (like last year) to privately send you a note about Ricky’s upcoming Birthday (April 10th). So lets get busy and send her a birthday card (with money in it – ANY amount will help).

Send a check made out to PSC Partners Seeking a Cure:

PSC Partners Seeking a Cure5237 So. Kenton WayEnglewood, CO 80111

Barb in Texas - Together in the Fight - Whatever it Takes!

..

[Guest guest]

Hi Barb,

That is a really thoughtful gesture on your part.

Actually, I don’t need any birthday cards, although we’ll always

accept donations to PSC PartnersJ The best birthday gift for

me is to have everyone continue to do what they are doing…..helping us in

whatever way everyone can…..by donating their time to one of our projects….by

donating money or soliciting donations from your friends/family/colleagues….by

coming to the conference….by writing an article for the newsletter, etc.

Thank you to everyone who keeps donating their time, effort and money to PSC

Partners Seeking a Cure. Thanks to you, we have made incredible progress

in our first four years as a foundation. Together in the fight, whatever

it takes!!!

Ricky

PSC 2003

From:

[mailto: ] On Behalf Of Barb Henshaw

Sent: Monday, April 06, 2009 9:45 AM

To:

Subject: I'M REALLY PISSED NOW!!

I don’t

have the time (like last year) to privately send you a note about Ricky’s

upcoming Birthday (April 10th). So lets get busy and send her

a birthday card (with money in it – ANY amount will help).

Barb in Texas

- Together in the Fight - Whatever it Takes!

Son Ken (34) UC 91 PSC

99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas

[Guest guest]

Hi Barb,

That is a really thoughtful gesture on your part.

Actually, I don’t need any birthday cards, although we’ll always

accept donations to PSC PartnersJ The best birthday gift for

me is to have everyone continue to do what they are doing…..helping us in

whatever way everyone can…..by donating their time to one of our projects….by

donating money or soliciting donations from your friends/family/colleagues….by

coming to the conference….by writing an article for the newsletter, etc.

Thank you to everyone who keeps donating their time, effort and money to PSC

Partners Seeking a Cure. Thanks to you, we have made incredible progress

in our first four years as a foundation. Together in the fight, whatever

it takes!!!

Ricky

PSC 2003

From:

[mailto: ] On Behalf Of Barb Henshaw

Sent: Monday, April 06, 2009 9:45 AM

To:

Subject: I'M REALLY PISSED NOW!!

I don’t

have the time (like last year) to privately send you a note about Ricky’s

upcoming Birthday (April 10th). So lets get busy and send her

a birthday card (with money in it – ANY amount will help).

Barb in Texas

- Together in the Fight - Whatever it Takes!

Son Ken (34) UC 91 PSC

99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas

[Guest guest]

Hi Barb,

That is a really thoughtful gesture on your part.

Actually, I don’t need any birthday cards, although we’ll always

accept donations to PSC PartnersJ The best birthday gift for

me is to have everyone continue to do what they are doing…..helping us in

whatever way everyone can…..by donating their time to one of our projects….by

donating money or soliciting donations from your friends/family/colleagues….by

coming to the conference….by writing an article for the newsletter, etc.

Thank you to everyone who keeps donating their time, effort and money to PSC

Partners Seeking a Cure. Thanks to you, we have made incredible progress

in our first four years as a foundation. Together in the fight, whatever

it takes!!!

Ricky

PSC 2003

From:

[mailto: ] On Behalf Of Barb Henshaw

Sent: Monday, April 06, 2009 9:45 AM

To:

Subject: I'M REALLY PISSED NOW!!

I don’t

have the time (like last year) to privately send you a note about Ricky’s

upcoming Birthday (April 10th). So lets get busy and send her

a birthday card (with money in it – ANY amount will help).

Barb in Texas

- Together in the Fight - Whatever it Takes!

Son Ken (34) UC 91 PSC

99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas