RE: Re: Daughter's diagnosis

[Guest guest]

Thanks for everyone’s replies. I am grateful for all

of the information, Dave. My daughter has an appointment with a Dr Bacon

at St Louis University Hospital in October. From what I’ve read,

they have an excellent liver department, including a fairly new liver

center. Has anyone here had any experience with either this dr or this

hospital? It is on my insurance plan, and so far, through all of ne’s

Crohn’s and pain management problems, we have been extremely happy with

them.

Also, is it possible that a great portion of the right side

abdominal pain that she has had over the last few years is attributable to

PSC? If so, with treatment, may she be able to lower her doses of pain

medication? That would certainly be wonderful!

Thanks again,

Mark

From:

[mailto: ] On Behalf Of

Sent: Monday, September 15, 2008 11:03 PM

To:

Subject: Re: Daughter's diagnosis

Dear Mark;

I am so sorry to hear about ne's diagnosis of PSC, but glad that

you found us. Yes, it's very frightening to read about PSC. I was in

your shoes 5 years ago when my then 18 year-old son was diagnosed

with PSC and UC. The future seemed so bleak. But looking back, he has

really had very few health problems in the last 5 years, and his

liver function tests are now the best that they have been in 5 years.

He's on a cocktail of drugs and supplements (Asacol, ursodeoxycholic

acid, rifampin, fish oils, vitamins and extra folic acid), and this

combination seems to be helping [at least as assessed by improving

liver function tests]. I can provide a rationale for why he is taking

each drug and supplement, but will defer that to another post if you

are interested. The main point is that 5 years ago we didn't have

much hope, but here we are 5 years later, and his health is still

very good. He graduated from college, and is now in his 2nd year at

medical school (Indiana University) in the MD/PhD program.

Five years ago, my wife and I were determined to do something

positive for the PSC cause, and so we set about collecting the

world's literature on PSC, IBD and autoimmune diseases. We now have a

collection of over 93,000 abstracts and 50,000 full papers. I dare

say that this is one of the planet's best collections of PSC/IBD

articles? It's a huge database that is constantly being added-to and

updated. I can't yet claim that we have found a cure, but there are

certainly some interesting glimmers of hope ... and its these

glimmers that keep me going on this project.

We also got involved, along with many other members of this support

group, in helping the PSC Partners Seeking a Cure foundation get off

the ground and running. The foundation has now had 4 conferences, is

getting to know all of the top PSC researchers world-wide, has

contributed funds to support the North American STOPSC research

initiative, and will soon begin to fund PSC research directly via the

PSC Partners Seeking a Cure grants program. All of this has been made

possible by dedicated individuals volunteering their time and energy,

and a network of their friends, colleagues and family members

contributing dollars to support research. I have to conclude that

this is very positive progress indeed.

I would like to encourage ne and you to think about coming to

the PSC Partners Seeking a Cure conference in Chicago next May.

ne will meet several PSCers of her own age, sharing the same

health issues and concerns. You will meet an incredible bunch of

caregivers who can share valuable information and provide support.

Diagnosis is a terrible time, for sure. But hang in there, keep hope

alive, and ask lots of questions. Someone will try to answer them.

Best regards,

Dave

(father of (23); PSC 07/03; UC 08/03)

www.psc-literature.org

www.pscpartners.org