Primary Sclerosing Cholangitis - can anyone provide some first hand
details of this condition - symptoms or treatment experience? I've
just been told I have this and it's very rare disease.

<The exact cause of primary sclerosing cholangitis (PSC) is not known.
Theories include the role of  bacteria, viruses and immune system
problems. It is possible to have the disease for years without
symptoms. Symptoms include itching, tiredness, jaundice (yellowing of
the skin and eyes) and fevers and chills.
http://www.liver.ca/english/liverdisease/schlerosing.html
PSC affects more men than women and often begins in the person’s 30s,
40s and 50s.

The disease is cured by a liver transplant. However there is a long
waiting list for liver transplantation so treatment often involves
relieving the symptoms until a liver becomes available.

A new technique for live donor liver transplant has been developed. In
2001 a live donor liver transplant was carried out to save the life of
a 30 year old man who with primary schlerosing cholangitis. His 24
year old brother donated part of his liver.
http://www.mayoclinic.org/news2001-sct/1147.html

The various treatments for PSC Treatments for  PSC are evaluated at
the following sites:
http://www.ikp.unibe.ch/lab2/PSCRX.html
http://www.uptodate.com/patient_info/topicpages/topics/BiliaryT/5266.asp?usd=986225061&r=/patient_info/topicpages/topics/BiliaryT/5266.asp&app=mktg&server=www.uptodate.com


A personal account from a sufferer of Primary Schlerosing Cholangitis
explains how he took silver and averted the need for a liver
transplant. http://www.essense-of-life.com/info/TPSCholangitis.htm
Despite an extensive search I have not found any scientific research
which backs up this treatement.

Chris Klug, an Olympic snowboarder diagnosed with sclerosing
cholangitis spent seven year on the liver transplant list. After
having a liver transplant, he made a full recovery.
http://www.kidney.org/recips/athletics/02games/athletebios.cfm
http://www.washspkrs.com/news2.cfm?newsitem=105

Todd Christensen tells how the symptoms of schlerosing cholangitis
disappeared  after he took Coral Calcium. He also raises the
possibility that the diagnosis was not correct and that something else
was responsible for his symptoms.
http://www.coralconnection.net/cci/testimonials.html

The personal experience of Phil Alfeld can be seen at 
http://www.pscf.org/family/PegPhilAlfeld.html

Links to more personal experiences:
http://www.lifelineofohio.org/donor/stories.cfm?show=details&storyId=9
http://www.helpbrookedavis.com/bio.html
http://www.mindspring.com/~dchamann/illness_index0.html

The PSC Foundation provides a forum for sufferers to discuss their
experiences. It also provides the latest news about PSC.
http://www.pscf.org/index.html>


<Additional links:>

<PSC forum>
<http://groups.yahoo.com/group/psc-support/>

<PSC support>
<http://www.psc-support.com/faq.html>

<Beloiter suffering from the same disease as Walter Payton>
<http://216.239.51.100/search?q=cache:E0s9KsVQ-CcC:www.beloitdailynews.com/299/live8.htm+%22schlerosing+cholangitis%22&hl=en&ie=UTF-8>

<Brent Axthelm receives a liver transplants for PSC.>
<http://www.sunnews.com/news/1999/0819/ebrent.htm>

<Sclerosing Cholangitis>
<http://cpmcnet.columbia.edu/dept/gi/PSC.html>


<Search strategy:>

<"schlerosing cholangitis">
<://www.google.com/search?q=%22schlerosing+cholangitis%22&hl=en&lr=&ie=UTF-8&start=0&sa=N>

<"primary sclerosing cholangitis"   symptoms>
://www.google.com/search?q=%22primary+sclerosing+cholangitis%22+++symptoms&hl=en&lr=&ie=UTF-8&start=10&sa=N

<"primary sclerosing cholangitis"  "i was diagnosed">
<://www.google.com/search?hl=en&lr=&ie=UTF-8&q=%22primary+sclerosing+cholangitis%22++%22i+was+diagnosed%22&spell=1>


<Hope this helps.>

Here are some links for support groups and discussion groups:

http://www.psc-support.demon.co.uk/
http://curezone.org/dis/1.asp?C0=854
http://ibscrohns.about.com/cs/psc/
http://groups.yahoo.com/group/psc-support/