Re: reply to Von. Indolent disease.

[Guest guest]

I can see that people are getting fed up with this topic and I agree that it isn't getting us anywhere. So I don't want to say much more but if I can just clarify what I was trying to say.

Sometimes there is different usage between us English-speaking peoples, "divided by a common language." By indolent I mean "causing little or no pain," slow to develop or heal," (Webster's), or "causing no pain, painless, especially in idolent tumour, ulcer." (Oxford English Dictionary.) In this sense some of us are fortunate enough not to suffer at present from PSC and I thought it could be described as indolent.

"In remission" has several meanings one of which is "the period when no evidence of underlying disease exists." (Taber's Cyclopedic Medical Dictionary.). This the sense I use. PSC does not go away; there is always evidence that the underlying disease exists and, in this sense, does not go into remission. BUT if it means "a temporary disappearance or reduction in the severity of the symptoms of the disease, or the period during which this occurs," then I can see that it would be appropriate to say PSC can go into remission.

But let's not quibble about words. What we were at pains to do was to make sure that our members, especially the recently diagnosed ones, understood that they did not have a fatal or terminal illness. Some of our members have come out of their consultant's surgeries with this impression and start to make their wills or prepare to hand over their businesses to their families. Many of our doctor's are not patient-friendly and give their patients little or no information. In the UK many of our members have been diagnosed by gastroenterologists without much training in liver disease and have little experience of treating PSC.

We don't think that that statement that I read out at the Conference is inaccurate and we HAVE stressed the enormous variability in the presentation of PSC and the serious consequences that may be suffered. But the majority of our 400 members still manage to have a fair to good quality of life for many years.

Current PSC research in the UK:

We finally received an email from Dr. Chapman on his current research work but no details.

These include the following:

Submission of his high-dose Urso paper.

Analysing the data from magnetic spectroscopy in fatigued PSC/PBC patients.

Looking at T-regulatory cells in the pathogenesis of PSC and PBC.

Doing MRCP on colitis patients with normal LFTs to find out how many have underlying PSC and PBC.

Looking at clinical and genetic features of PSC + Crohn's.

He mentions a big PSC/IBD conference at Oxford on June the 8th sponsored by Falk.

Prof. , at the University of Birmingham, whom several of you met at the Bethesda PSC Conference in 2005, is to receive a research grant from the British Liver Trust to study "The molecular basis of mucosal T-cell homing to the liver in PSC."

The benefits of the proposed research.

The study will look at the process involved in dysregulating the body's normal immune

system. It will look at how these processes are controlled. They have demonstrated

previously that the lymphosytes which cause the inflammation in the gut, can be mis-

directed to the gut where they can cause inflammation leading to the development of

PSC. This occurs because lymphosytes that are activated in the gut are programmed to

recognise specific molecules that are usually restricted to gut same molecules are expressed

[Guest guest]

pam wrote:

> by the way, how are you feeling

> today?

>

I'm feeling great at the moment in spite of only about five hours of

sleep due to all the meds they've got me on! I've got to get blood work

run this morning and see the Dr. at the clinic, so we'll see how that is

coming along. I'm just amazed how much better I feel every single day!

I had thought that by now my progress would have sort of leveled off,

and any additional improvement would be very gradual, but it continues

to be leaps and bounds!

athan