Welcome!!!

Welcome! You're not alone.

If your family has been affected by Primary Sclerosing Cholangitis (PSC), consider Living with Primary Sclerosing Cholangitis (PSC) your second home.

NOW....GET STARTED:

1. Become a Member
2. Make Friends
3. Post to a Forum
4. Read or write a Blog
5. Join or Create a Group
6. Follow us on Twitter
7. Become a fan to our Facebook

Got some QUESTIONS? 
Check our FAQ PAGE.

Read More from our  First-Time-User Guide.

Birthdays

Need a Doctor or Specialist?

Join Ben's Friends

Need a Second Opinion?

Disclaimer

All of the material provided on this site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings and any other material submitted on this site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health never disregard professional medical advice or delay in seeking it because of something you have read on this site.

Photos

Loading…
  • Add Photos
  • View All

Groups

Videos

  • Add Videos
  • View All

Pictures please !

It would be great if members could add a picture of themselves to their profile. It makes talking to each other or responding to questions so much more personal.

ClinicalTrials.gov Studies

Loading… Loading feed

Community Moderators

Please Be Kind & Use Appropriate Language

Let's Keep it Nice & Clean
1. No Spam
2. No Personal attacks
3. No Offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos)
4. No Profanity, sexual references and illegal activity subject matter are not allowed in the Chat Room.
5. Specific doctor or hospital names mentioned in a negative context, for legal reasons.
Specific doctor or hospital names in a positive context are welcome.
6. No sharing of members' posts to other sites without their express permission.
Thanks for your cooperation.

Partners

BensFriends.org is proud to partner with a number of organizations to help our members in various areas, including legal, financial, research and medical. 

Know more about our PARTNERSvisit this link.

 

Ben's Friends Members Survey

Thank you for taking time to participate in our survey.  We are so grateful that more than 1000 of you responded! We are now working on analyzing the data. We'll let you know of the survey results soon.

How common is PSC ?

What is primary sclerosing cholangitis? Primary sclerosing cholangitis is a liver disease in which the bile ducts (small tubes through which bile flows from the liver to the gall bladder and intestines) progressively decrease in size due to inflammation and scarring. As a result, bile that is normally carried out of the liver accumulates within the liver, which then damages liver cells. How common is primary sclerosing cholangitis? Although primary sclerosing cholangitis has been considered a rare disease, recent studies suggest that it is more common than originally thought. The disease may occur alone, but frequently exists in association with inflammatory diseases of the colon, such as chronic ulcerative colitis. Primary sclerosing cholangitis affects both sexes, but is more common in men.

Mobile App and E-Book Available!

Keep in touch with friends. Get support and information while on the go. DOWNLOAD the Ben's Friends iPhone App now!

Be inspired by the helpful tips and amazing stories of patients with rare diseases. Get the e-book "We're in This Together: Stories & Tips from Patients with Rare Diseases" HERE.

Itching or Pruritis.

Information on itching caused by Liver disease along with some suggestions for relief. http://www.hcvadvocate.org/hepatitis/factsheets_pdf/pruritus.pdf

What is PSC ?

Primary sclerosing (skluh-ROHS-ing) cholangitis (koh-lan-JIE-tis) is a disease of the bile ducts in your liver. The term "cholangitis" in primary sclerosing cholangitis refers to inflammation of the bile ducts, while the term "sclerosing" describes the hardening and scarring of the bile ducts that result from chronic inflammation.

Forum

Recurring Episodes / Attacks for 1.5 Years - Recently Diagnosed as PSC

Started by Textbook in General. Last reply by Kim 13 hours ago. 6 Replies

Hello everybody, new member here.  My name is Textbook, I'm a 26-year old male from Michigan.  In December 2012, I had stomach pains in my upper-right quadrant , near the lower ribcage.  I…Continue

One last phone call

Started by Kim in General. Last reply by Kim 13 hours ago. 11 Replies

It's been a while since I've been on the site. I hope you all are living to best that you can. Keeping hopeful.I saw my doctor yesterday. I was told that my chances of getting a Liver from the Donor…Continue

TIPS

Started by Kim in General. Last reply by Stephen Cox yesterday. 5 Replies

My doctor wants to do a TIPS placement. I'm a little nervous about encephalopathy. Will I still be able to drive, read a novel, get around on the subway? Has anyone else had this surgery done? I…Continue

Latest Activity


Moderator
Stephen Cox left a comment for Connie Howard
"Hello Connie, Welcome to this PSC group. I am sorry to read about your difficulties. We are here…"
2 hours ago
Profile IconConnie Howard and rickysheart joined Primary Sclerosing Cholangitis (PSC) - Online Support Group
2 hours ago
Kim replied to Textbook's discussion Recurring Episodes / Attacks for 1.5 Years - Recently Diagnosed as PSC
"Its up to your doctor if they think you need to be placed on the transplant list."
13 hours ago
Kim replied to Kim's discussion One last phone call
"Hi Detmsh, Can't get help from my brothers but I have to keep believing that when one door…"
13 hours ago
detmsh replied to Kim's discussion One last phone call
"Hi Kim - Hope you're doing well. I've seen your thread and hoped we'd hear some…"
16 hours ago

Moderator
Stephen Cox left a comment for rickysheart
"Hello Rickysheart, Welcome to this PSC support group. As a caregiver I know from personal…"
22 hours ago

Moderator
Stephen Cox left a comment for PSCMom
"Happy birthday PSCMom. I hope today is special for you. How are things with your son ? How are you…"
yesterday

Moderator
Stephen Cox replied to Stephen Cox's discussion Brain fog with chronic liver disease.
"That's right. Hopefully if a person has a caregiver, they will notice changes and take action."
yesterday

Top Content 

1 Recurring Episodes / Attacks for 1.5 Years - Recently Diagnosed as PSC

Recurring Episodes / Attacks for 1.5 Years - Recently Diagnosed as PSC

Posted by Textbook on April 22, 2014

2 Anything to be concerned about or normal with psc???

Anything to be concerned about or normal with psc???

Added by meerkat on April 22, 2014

3 Brain fog with chronic liver disease.

Brain fog with chronic liver disease.

Posted by Stephen Cox on April 16, 2014

4 Helpful things people can do to help the chronically ill.

Helpful things people can do to help the chronically ill.

Posted by Stephen Cox on April 14, 2014

5 One last phone call

One last phone call

Posted by Kim on March 12, 2014

6 Burning feet

Burning feet

Posted by evrim on February 12, 2014

7 TIPS

TIPS

Posted by Kim on April 6, 2014

8 Headed for consult

Headed for consult

Posted by YVazq on April 4, 2014

9 New To the Group

New To the Group

Posted by mah437 on April 9, 2014

10 Never give up.

Never give up.

Added by Armando Abrero on April 20, 2014

Blog.Bensfriends.org

Loading… Loading feed

Best of Ben's Friends

Loading… Loading feed

What is Best of Ben's Friends?

Best of Ben's Friends is a collection of inspirational or informative posts from across our family of patient communities. To nominate a post, discussion, photo, or video, email the link to info@bensfriends.org.

 

Please click on FIRST TIME USERS and WELCOME! tabs for helpful info, also the Help tab for Links . THANKS!

 
 
 

Help Us Help Others

Help Ben's Friends

Like, Follow & Forward Us!

Follow Me on Pinterest

To Support LivingWithPSC.org, Click an Ad. Or Two.

Are You in Crisis?

First take a deep breath, then call the National Suicide Prevention Hotline immediately.  1-800-273-TALK for members in the United States.

For international members, please visit http://www.suicide.org/international-suicide-hotlines.html for information on where to call.

Blog Posts

Anything to be concerned about or normal with psc???

Posted by meerkat on April 22, 2014 at 5:33am 1 Comment

Hi woke up at 5am with excrutiating pain in my right side,and have been in agony ever since ( about 5 hrs) if I move or take a deep breath it hurts even more also feeling very nauseous is this anything to worry about or just routine with psc…

Continue

Never give up.

Posted by Armando Abrero on April 20, 2014 at 5:00am 0 Comments

Just wanted to share this inspiring video.

Laugh often. Love a lot. Be strong. Never give up.…

Continue

Events

About

Ben created this Ning Network.

© 2014   Created by BensFriends.org

Badges  |  Report an Issue  |  Terms of Service