About Primary Sclerosing Cholangitis - by PSC Trust

[babygirll85]

It makes me sad when i hear there is no cure, NOT TRUE. 2 yrs ago my bro was diagnosed with colitis and psc. the docs told him to get on the list for a liver, his liver enzymes were in the thousands 2000+ at times, he refused. he stopped taking his meds and went to a herbalist, i thought he was crazy. he eliminated all junk foods from his diet, for months he survived off natural juices raw vegies juiced, fruits,herbs etc. his last enzyme check shocked the docs. he is 100% cured today.

[00oo00ownedlv]

@babygirll85 is that really true? can you go into more details please.

[maganit1]

I`m glad to read your word. I have PSC and UC and I can`t believe there is no hope for us. I would be really pleased if you could give me more informations about your brother and about that herbs that he tried. I wish my best for your brother. Anita

[babygirll85]

@maganit1 Im sorry to hear that you have this disease. But my brother went to a herbalist here in ny who laughed at him when the doctors told him there is no cure.. pcs is an autoimmine disease your body is turning on itself.. with proper diet and the right foods you can get your body healthy again. I was there with my brother through it all. And i will personally give you his contact info he will share his story with you. He is still off meds and his most recent enzyme check was normal.

[maganit1]

@babygirll85 Thank you so much. My e-mail address is a_orbanmagashazy@o2.co.uk I have been told by my doctor in Hungary that I have to avoid all food wich contains artificial preservatives. It`s not easy since most of the food have, but I`m trying. Thank you again your help.

[IKANBILES]

The best think you are positive, at the same time knowing the limitation it has imposed on you. I am thinking about you and if there is anything we can do please ask

[81brett83]

I have PSC, was diagnosed at 18 after 10 years of UC. Was given another estimate of 10 years till requiring transplant, so far so good and Im almost 27, think I have a few symptoms now, but probably need a stent of dialation procedure again !!

[IKANBILES]

There are all forms of risks and the key thing is to be positive and follow the basic good hygenie practise.

[Tavruz4300]

I have heard there is only 10% risk(Transplanted PSC patients get higher dose of medicin over time to prevent relapse)

A half year ago I got my new liver and fortunately there have been no problems at all. Aftes 14 days I was home again and after 2 month I begin to work again. Only the Tacrolimus medicine have some sideeffects but it disappear over time.

[prettyncute08]

the sad thing is i have sclorosing colongitis...and ive had it since i was born..i am now 11 and my worry is that my case could kill me at any time..so i have to live in a hospital..in the icu..please pray for me because i want my nightmares to go away..and i want to stay on Earth with all my friends...and i take that to the heart..i am not a liar..why would i lie about this..

[IKANBILES]

Have faith. You will live long All our love and prayers to you

[aerdramaqueen]

My best friend had PSC ever since she was born. It has sent her in and out of the hospital numerous times. Two years ago, when we were just young teens, she became very sick. She had a live donor liver transplant, and over time returned to full health. Today she's still going strong like any other teenager. She explains the experience only made her stronger, that it makes her who she is. With new science, PSC treatment rates are better than ever. I have high hopes for you and hope you do too.

[Tigergir7]

@aerdramaqueen How did she go with the liver transplant? Because my friend has this disease and is on the transplant list :(

[IKANBILES]

I think you should think positive and live life to the full. There are people living in their seventies with PSC

[IKANBILES]

We are hoping to hold 2nd International PSC Conference in 2009 called "Igniting PSC awareness". Hope many will respond and assist. We need volunteers, fundraisers etc.

[IKANBILES]

fund raising, helping us in organizing Int Conference and public awareness for example

Kind regards

[IKANBILES]

We are looking for volunteers to bring awareness to the very many psc patients, parents and doctors. We are also looking for assistance in raising funds and finally we hope to organise an international conference bringing people from all backgrounds to exchange ideas info etc.

[vesicapisces]

Hey, are you asking me?

[IKANBILES]

there is no evidence that after a transplant, you are free of psc!

[aerdramaqueen]

There is a 20% chance the PSC will return

[IKANBILES]

I am not sure - there are a number of over seventies with psc and having quality of live and then there some who are lucky if they are able to celebrate their twentieth birthday. The reason is that we do not know enough about the causation.

[IKANBILES]

The reason for transplant in most cases is not that nothing could be done but very late diagnosis in which case transplant is the only solution. There are cases where early diagnosis has assisted in the quality of life. We are hoping that setting up of Genome Data Base is the first set, side by side with research. Attitude is important otherwise we will waste another 45 years and no progress.

Help us to make it possible.

[IKANBILES]

More people assisting will make all the difference between giving someone life and hope and misery and pain

Please help

[IKANBILES]

We need your help to set up a PSC genome data base to help others. We are clsoe to achieving our goal.

Please help - every little helps

[IKANBILES]

PSC has been around for 40 years but no progress why ? -- no funding. We want to raise  monies funding research into the aetiology of PSC. Scientist have developed the technology to do genome wide scanning and have used it to superb effect.

Please help us to raise funds

[IKANBILES]

Anymore ideas for fund raising?

[IKANBILES]

Anyone for a London marathon to raise funds or other ideas.

[IKANBILES]

very good news - appreciate more info so that we can pass it to others. We are thinking of a international conference - perhaps you might want to give a paper on the progress of your girlfriend and her treatment- we will all appreciate your input

[vesicapisces]

My girlfriend has had PSC for about 3 years, with doctors offering nothing but their skeptical negative attitudes and arrogance that only encourages patients' lack of hope and feelings of defeat. She was in very bad shape. together we did alot of research and tried a combination of treatments and changes in lifestyle. She is now almost fully healed, indepedant of doctors. Don't believe doctors, there ARE cures for everything. I will gladly speak with anyone who wants to know what helps cure PSC.

[cullen818]

What treatment??? Sorry, but transplantation is the treatment right now. Don't give false hope to people based on a single case of remission. The liver will eventually fail, prolonging it's time is great, but a true cure is not out there.

[vesicapisces]

Why are you so opposed to the possibility that someone out there knows what to do?

[IKANBILES]

Before it is too late act now, safe somone

[IKANBILES]

Since January, I know of five young lives gone for good because nobody cared.Please help - one life is one too many, with your help, understanding it will make the difference

[IKANBILES]

Help - what are we waiting for ? Time is not on the side of a sufferer. Please help in anyway you can

[IKANBILES]

Lets all stop and think how lucky we are - give a thought for those who are not!