Re: PSC Partners Seeking a Cure Newsletter (July, 2007)

[Guest guest]

Hi !

My name is Holmgren, father to Nicklas. Being new to this

group I must start with saying I'm very enthusiastic and astonished

about the work you and Ricky and the others are performing for the

benefit of the people diagnosed with PSC! The time you put in and

the knowledge you have - this is really elevating and giving hope to

PSCer's, their relatives and caretakers!

The Newsletters are a great repository of information - and the PSC

Literature aswell!

Nicklas - diagnosed with PSC, Chron's and Celiac disease - was

attending the Denver conference together with his mother Helena.

They found this very informative and encouraging - great conference

and many nice and knowledgeable attendees!

As Ricky said in the Newsletter they would very much like to hear

from other attendees at their correct email address - which (sorry

Ricky) was not quite correct this time either... So here it is

again: pdl541o@... . Depending on which font you use this is

a tricky one to read - three letters, 'pdl' - three digits, '541' -

one letter, 'o' . After '@' there are the letters 'tninet.se' which

was what became wrong in the Newsletter.

- perhaps you can reload the Newsletter once more with this

one, if time permits?

Feels great to have found and participate in this group

on Yahoo. We will read through as much as we can and maybe return

with some questions or input from Sweden later on!

Very Best Regards from

>

> Dear All;

>

> The PSC Partners Seeking a Cure Foundation is pleased to announce

that

> the latest issue of its newsletter is available at:

>

> http://www.pscpartners.org/NewsVol-3-1.pdf

>

> You will need Adobe Acrobat Reader installed on your computer in

order

> to read this file!

>

> I'd like to apologize that this issue is a little late. Our next

issue

> of the newsletter will likely be available in August, 2007.

>

> Best regards,

>

> Dave

>

> www.psc-literature.org

> www.pscpartners.org

> rhodesdavid@...

>

[Guest guest]

Hej ,

Roligt att höra från en anna svensk med PSC. Jag har läst att detta är

tyvärr kanska vanligt i sverige. Jag bor i Los Angeles, men kanske vi får

träffas i ville, FL i maj 2008.

Jag har haft UC sen 1970. Jag hade en colectomy i 2000, när de fick se att

min liver var dålig - cirrohtic. Det var då som PSC mistankts. I 2006

uptäcts PSC o autoimmune hepatit. Jag har 2 kusiner i sverige med Chrons, så

det går i familjen.

Hej så länge, och må så gott.

-Marie Nilsson

>Hi !

>

>My name is Holmgren, father to Nicklas. Being new to this

>group I must start with saying I'm very enthusiastic and astonished

>about the work you and Ricky and the others are performing for the

>benefit of the people diagnosed with PSC! The time you put in and

>the knowledge you have - this is really elevating and giving hope to

>PSCer's, their relatives and caretakers!

>

>The Newsletters are a great repository of information - and the PSC

>Literature aswell!

>Nicklas - diagnosed with PSC, Chron's and Celiac disease - was

>attending the Denver conference together with his mother Helena.

>They found this very informative and encouraging - great conference

>and many nice and knowledgeable attendees!

>

>As Ricky said in the Newsletter they would very much like to hear

>from other attendees at their correct email address - which (sorry

>Ricky) was not quite correct this time either... So here it is

>again: pdl541o@... . Depending on which font you use this is

>a tricky one to read - three letters, 'pdl' - three digits, '541' -

>one letter, 'o' . After '@' there are the letters 'tninet.se' which

>was what became wrong in the Newsletter.

> - perhaps you can reload the Newsletter once more with this

>one, if time permits?

>

>Feels great to have found and participate in this group

>on Yahoo. We will read through as much as we can and maybe return

>with some questions or input from Sweden later on!

>

>

>Very Best Regards from

>

>

>

>

>

>

>

>

> >

> > Dear All;

> >

> > The PSC Partners Seeking a Cure Foundation is pleased to announce

>that

> > the latest issue of its newsletter is available at:

> >

> > http://www.pscpartners.org/NewsVol-3-1.pdf

> >

> > You will need Adobe Acrobat Reader installed on your computer in

>order

> > to read this file!

> >

> > I'd like to apologize that this issue is a little late. Our next

>issue

> > of the newsletter will likely be available in August, 2007.

> >

> > Best regards,

> >

> > Dave

> >

> > www.psc-literature.org

> > www.pscpartners.org

> > rhodesdavid@...

> >

>

>

_________________________________________________________________

http://imagine-windowslive.com/hotmail/?locale=en-us & ocid=TXT_TAGHM_migration_HM\

_mini_pcmag_0507

[Guest guest]

Hi ,

So sorry about the continuing confusion with your e-mail address! Thanks for straightening it out. We all enjoyed meeting Nicklas and Helena at the conference, and hope to meet you some day as well. Have a good summer.

Ricky

From: [mailto: ] On Behalf Of nhpsseSent: Monday, July 16, 2007 5:14 AMTo: Subject: Re: PSC Partners Seeking a Cure Newsletter (July, 2007)

Hi !My name is Holmgren, father to Nicklas. As Ricky said in the Newsletter they would very much like to hear from other attendees at their correct email address - which (sorry Ricky) was not quite correct this time either... So here it is again: pdl541o (AT) tninet (DOT) se . Very Best Regards from ---

..

[Guest guest]

Hi Ricky!

No problem - now the email address works!

Nicklas and Helena were overwhelmed by the reception they got by you

and Don and all at the conference!

If nothing comes in the way we are planning on getting to

ville the whole family...

Have a nice summer Ricky!

>

> Hi ,

>

> So sorry about the continuing confusion with your e-mail address!

Thanks

> for straightening it out. We all enjoyed meeting Nicklas and

Helena at the

> conference, and hope to meet you some day as well. Have a good

summer.

> Ricky

>

> _____

>

> From: [mailto:psc-

support ] On

> Behalf Of nhpsse

> Sent: Monday, July 16, 2007 5:14 AM

> To:

> Subject: Re: PSC Partners Seeking a Cure Newsletter

(July,

> 2007)

>

>

>

> Hi !

>

> My name is Holmgren, father to Nicklas. As Ricky said in the

> Newsletter they would very much like to hear

> from other attendees at their correct email address - which (sorry

> Ricky) was not quite correct this time either... So here it is

> again: pdl541o (AT) tninet (DOT) <mailto:pdl541o%40tninet.se> se .

> Very Best Regards from

>

> ---

>

> Recent Activity

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[Guest guest]

Hej Marie!

Nice to hear from you! I did suspect you were a Swedish speaking

person (I looked in the Database), but since I need to work on my

English I'll continue with this.

Nicklas was diagnosed with his diseases when he was 14, now turning

20 later this summer. The first thing the doctors found out was the

Celiac, combined with lactose intolerance - then Chron's and later

on PSC. I'd rather seen it had been me not him having these problems

(or none at all for that matter...), but these things comes without

any options such as choices, dont they?

So far he is fully asymptomathic thanks to the medicine he takes

mornings and evenings. We do hope this will be an everlasting

state...

Here in Sweden they say approx 3 percent of the patients having

Chron's also has got PSC (think it's about the same ratio for UC).

Also there's a figure saying 80 people out of a million have PSC -

which gives approx 700 PSCers in this country (9 million

inhabitants, give or take).

Not so very common with PSC - which is positive, of course - but

leads to a not so very high budget for research. And a low

understanding of what this is all about - if you mention PSC the

average person have no clue (I didn't either..), which also sadly

goes for the average doctors and politicians.

But we do nevertheless have some very competent researchers

in this field, thanks to very dedicated specialists!

Marie - you are very welcome to use our email adress (in the latest

reloading of the Newsletter it's corrected) - and we can talk some

Swedish there?

Ha det bra - vi hörs!

> > >

> > > Dear All;

> > >

> > > The PSC Partners Seeking a Cure Foundation is pleased to

announce

> >that

> > > the latest issue of its newsletter is available at:

> > >

> > > http://www.pscpartners.org/NewsVol-3-1.pdf

> > >

> > > You will need Adobe Acrobat Reader installed on your computer

in

> >order

> > > to read this file!

> > >

> > > I'd like to apologize that this issue is a little late. Our

next

> >issue

> > > of the newsletter will likely be available in August, 2007.

> > >

> > > Best regards,

> > >

> > > Dave

> > >

> > > www.psc-literature.org

> > > www.pscpartners.org

> > > rhodesdavid@

> > >

> >

> >

>

> _________________________________________________________________

> http://imagine-windowslive.com/hotmail/?locale=en-

us & ocid=TXT_TAGHM_migration_HM_mini_pcmag_0507

>

[Guest guest]

Hi ,

Nice to hear from you - English is fine. It's easier for me. And your English is great - very impressive.

I think I've read that 1 in 100,000 have PSC in this country, which would be about 10 in 1 million, not 80. That would mean that by ratio, it's more common in Sweden. I know quite a lot of research seems to come from Sweden, even though it's an uncommon disease. And I simply assume that no one but a hepatologist would know what it is, and even then they may not be familiar with it. I've found about 6 people so far in LA with it. But with about 10 million people in the LA area, there should be about 100 of us here.

Sorry to hear that your son Nicklas needs to deal with this disease. But hopefully he'll stay asymptomatic.

-Marie

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