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									                                                    Primary Biliary Cirrhosis
                                                             PBCers Meeting The Challenge
                                                                                 September 2007

       2007 PBC Cleveland Conference                                    Sertraline can effectively reduce itching and the drug Modafinil
“Celebrating Progress, Hope, Friendship & Knowledge”                    has benefited patients plagued with fatigue.
                         By Anne Vertrees
                                                                        Dr. David Barnes of the Cleveland Clinic addressed the procedures
 “Resounding success”, “great information”, “awesome speakers”          and tests for PBC. His presentation explained the basics of PBC
are just some of the remarks shared by attendees of the 2007            procedures and tests and he explained in depth the meaning of the
PBCers Conference held in Cleveland, Ohio.                              test results. He also stated that liver biopsy is useful only for
                                                                        prognosis and is now being replaced by the Biomarkers (scans).
Many newly diagnosed as well as conference veterans were in
attendance for the very informative and well-organized event.           Dr. John Fung presented facts and explanations of the liver
Carol Roberts and her team of organizers offered the attendees          transplant process and how if affects patients long term along with
insights into the current research in PBC, great camaraderie,           the risks involved post-transplant. He also reported that survival
fundraising opportunities and informative speakers.                     rates are improving for people over 50 years old.

Speakers highlights:                                                    Dr. Hope Barkoukis presented her talk, “Being Kind to your Liver-
                                                                        Nutritionally”, a valuable subject of importance.
Dr. Eric Gershwin, noted researcher from University of California,
Davis, spoke of his ongoing research and how it is leading him          Annette Humberson spoke of “Coping with Chronic Illness” and
more to the theory that PBC is genetic, but with environmental          Drs. Ellen Sogolow and Judith Lasker explained their current study
connotations. He is also conducting a study of the drug Retoxin as      with the PBCers group.
an alternative therapy for non-responders to Ursodiol. Dr.
Gershwin stated his team is making strides toward stem cell             From the excellent slate of speakers to the fun events planned by
transplants for PBC patients.                                           organizers, highlights included an historical walk of Cleveland
                                                                        organized by Roberta Stavole, craft booths, fundraising auctions, a
Gordon Bowen from Life Banc, Cleveland addressed the issues of          quilt square sale and the opportunity to meet many new friends in
the waiting list, organ allocation and the Ohio state tax deduction     the PBC community.
for living donors.
                                                                        A most generous thank you to Carol and her fantastic team for
Dr. Claudia Zein spoke of options in PBC drug therapy. She stated       another very successful and notable conference!
that patients appear to do better with the optimum dose of Ursodiol,
13-15 mgs. per kilo of body weight per day, proven by a 10 year         Update: Auctions, crafts sales, quilt squares and the walk raised
follow-up study of patients. A drug of choice is pentoxyphilline, a     $5,400 for PBC research. Applause! Applause!
possible FXR agonist. She suggested that the antidepressant

   2007 “PBCer of the Year” Award                                                               2007 “Recognition” Award
   Glenda Rosenbloom in California                                                           Trudy Crossley in South Carolina

                                                Glenda and Trudy are real go-getters.
                                                 They’re always doing something to
                                                 help raise funds for PBC research,
                                                 offer support to other PBCers and
                                                   help promote PBC education.

                                                      The PBCers Organization
                                                      sincerely appreciates their
                                                     dedication and commitment.
                                             PBCers Meeting The Challenge

Dedication, a Lasting Legacy                                                           By Sandra Stoddard and Alynn Stefanko

In memory of Linie Moore’s son Ryan, a second medical book is being dedicated. Linie is President and founder of the PBCers
support group and PBCers Organization. Ryan was an early pioneer and visionary of the PBCers.

Title: Liver Immunology Principles and Practice

Edited by
M. Eric Gershwin, MD
Division of Rheumatology, Allergy and Clinical Immunology, University of California at Davis School of Medicine, Davis, CA

John M. Vierling, MD, FACP
Departments of Medicine and Surgery, Baylor Liver Health, Baylor College of Medicine, Houston, TX

Michael P. Manns, MD
Department of Gastroenterology, Hematology, and Endocrinology

The editors and authors of this book dedicate the text and its contents in memory
of Antony "Ryan" Moore (November 16, 1978 to March 12, 2005) "Fund for the cure
and United through education, research and support." Together with the gracious
help of PBCers, we will solve and cure not only Primary Biliary Cirrhosis, but other
immunemediated liver diseases as well."

”I'm just overwhelmed at the kindness of these wonderful doctors in thinking about
Ryan. Two books dedicated to him....I know Ryan is looking over my shoulder at this
and is so proud. Hugs, Linie”

The first book was Autoantibodies, Edited by Y. Shoenfeld, M.E. Gershwin and P. L.

We are so thankful for the work and dedication Linie and Ryan have done in education,
research and support of finding the cause and cure of PBC.

In Memory of Ryan Moore: http://pbcers.org/Ryan/Ryan.html                                            Ryan & Linie

                                                                        antimitochondrial antibodies. They have gathered
                                                                        a large amount of information and have now
                               M. Eric Gershwin, MD                     identified several components of the immune
                               Distinguished Professor of               system that seem to predispose to the develop-
                               Medicine; The Jack & Donald              ment of primary biliary cirrhosis. They have
                               Chia Professor of Medicine;              decided to take a big leap and to take one such
                               Chief, Division Rheumatology             mouse model and begin immunotherapy. The
                               Alergy & Clinical Immunology,            goal is to cure this mouse with some novel
                               University of California at Davis        manipulation of the immune system. It is a big
                                                                        leap and something that might not ordinarily take
                                                                        place for several more years but they have
                                                                        decided to try it now in the hopes of making a
            Doctor Gershwin’s Lab                                       breakthrough.

  Exciting news! During a period of two and a half
  weeks in 2006, Dr. Gershwin and his colleagues                              Please help in the fight against PBC by
  discovered three spontaneous mouse models of                                sending a tax deductible donation to the
  primary biliary cirrhosis. In other words, they                                      PBCers Organization,
  discovered three types of mice that develop problems                            Dr. Gershwin’s Research Fund
  with their liver just like patients with PBC. For the                                 1430 Garden Road,
  past year they have been investigating why their mice                                Pearland, TX 77581
  get sick, including studies of the genetics and the                                 No amount is too small!
                                                PBCers Meeting The Challenge

PBCers President, Linie Moore
This morning I received an e-mail from a newly diagnosed PBCer wanting to know if she is going to suffer all the ailments and symptoms she's
been reading about in the digest archives. She said she's scared to death, extremely depressed and doesn't want to live if all that is going to
happen to her.

After reading her e-mail, I was scared--scared not only for her, but the idea we might not be doing everything we can to help those newly
diagnosed. To remove some of their fears, offer the support they need and help educate them about this crazy disease.

I can still remember how scared I was when diagnosed. The depression overwhelmed me and I took up residence in the Dumpster Hotel for a
number of weeks. I thought I wouldn't see my son graduate Junior High or be able to take care of my mom or have any type of normal life. Then
when things couldn't get any worse, my insurance company canceled me. But it turned out to be a blessing because I started seeing a wonderful
new doctor. He encouraged me to get on the Internet to find others with PBC and to educate myself. Within a few weeks I had read everything
online about PBC. Also I met two others diagnosed with PBC, Diana Watson and Joan Dale, and we started our little e-mail circle. That was 11
years ago and the PBCers e-mail circle is still going. Not to just 3, but almost 3,000 PBCers around the world.

To those newly diagnosed.....The PBCers Organization is a wonderful source of help and support. It's comforting to know there are others who
understand what we feel, how to deal with symptoms and the fear of being newly diagnosed. We can learn so much from others in the group and
we are always here to help a PBCer.

The GOOD NEWS......PBC diagnosis is NOT a death sentence.

There is LIFE after PBC diagnosis.

PBC is a slow progressing disease over many years and the majority of PBCers won't need a liver transplant. Many diagnosed in early stages and
start Ursodiol treatment may not experience symptoms from PBC for many years, if ever. Some may only experience fatigue and or itching.

Our bodies are ALL different and PBC does NOT affect each of us the same way. Although many PBCers have some of the same symptoms, it
doesn't mean we all will experience them. The disease progression depends on many factors such as: other diseases/complications, lifestyle,
environment, stress, diet, exercise, genes and how well the body responds to medications. Some respond to the Ursodiol treatments in a month.
Others may take a few months, while some a year.

In the digest we discuss everything which might be related to PBC including other autoimmune diseases associated. Many in the group are
diagnosed with PBC and 1 or 2 other autoimmune diseases. We also have a few members who have PBC & AIH, and some with other liver
diseases such as PSC. So as you can see, many symptoms are discussed, but they are NOT all caused by PBC.

If you have symptoms which aren't normally due to PBC and your doctor says it’s not PBC related, then ask him/her if it could be another
autoimmune disease such as Sjogrens, Osteoporosis, etc. Find out what is causing the symptoms....just don't think everything is from PBC.

  PBC Tidbits                                                                                                              By Alynn Stefanko

  Mayo Clinic http://www.mayoclinic.com/

  Liver function tests: These blood tests check the levels of enzymes that may indicate liver disease in general and bile duct injury in
  particular. Certain liver enzymes are elevated in most people with primary biliary cirrhosis, especially alkaline phosphatase, which is
  produced in the bile ducts.

  Anti-mitochondrial antibodies (AMAs): Found in every cell, mitochondria are the prime energy producers of the body. Antibodies are
  proteins in the blood that help destroy bacteria and other harmful pathogens.

  Your body has an intricate network of ducts designed specifically to transport bile, a fluid produced in your liver. Bile is essential for the
  proper digestion of fats and helps rid your body of worn-out red blood cells, cholesterol and potentially toxic metals. In primary biliary
  cirrhosis, the bile ducts are slowly destroyed, causing harmful substances to build up in your liver and sometimes leading to irreversible
  scarring of liver tissue (cirrhosis).

  Wikipedia, The Free Online Encyclopedia           http://en.wikipedia.org/w/index.php?title=Liver&oldid=147243750

  Human liver transplant was first performed by Thomas Starzl in USA (1963) and Roy Calne in England (1965).

                                             PBCers Meeting The Challenge

Meet Sandra Souza                                                                                                  By Anne Vertrees

How and when were you diagnosed with PBC?
I was diagnosed in March 2004 after two years of treatment for what my PCP thought was an allergy. I had rashes, itching, fatigue and
just didn't feel like myself. After a change of allergy medication, my itching became truly miserable. I went to my dermatologist in
January 2004, itching all over and without a rash. He was baffled and ordered a series of tests. When the test results came back
abnormal, several of my doctors put me through a series of diagnostic tests. Eventually, that included an AMA test. About two weeks
later -- on my 46th birthday -- I received my positive AMA test results in the mail. I saw my hepatologist for the first time several days
later. He tentatively staged PBC at either 2 or 3 based upon my symptoms and LFTs. I had a liver biopsy the following week confirming
PBC, stage 1/2.

How did you learn to cope and what is helpful for you in dealing with your illness?
After joining the PBCers in March 2004, the very first post I remember reading in the Digest was from Ethel Hanna about Dr. Bernie
Siegal's book "Love, Medicine and Miracles". Reading it changed my whole perspective on my illness and my priorities in life. I decided
I was too busy to be sick. I was fortunate that only three months after I was diagnosed, I attended my first local meeting. Meeting other
people with PBC and hearing most of them were living relatively normal lives was very encouraging. Anything I can do to increase the
body of knowledge about PBC makes me feel like I am doing something to fight it. This includes sharing information about PBC with
others, hosting chats, attending conferences and local meetings, participating in research studies and fundraising.

Where do you locate your research findings and what are your favorite resources for information?
I like internet medical web sites and forums. Medscape is my favorite, especially Medscape Gastroenterology Medpulse (weekly
newsletter). I also like MedicineNet, PubMed, the Colorado State University Hypertextbooks and the FDA Electronic Orange Book.
Periodically I Google "Primary Biliary Cirrhosis" just to see what information pops up I haven't seen before.

Would you share the link and history of your private PBC website?
My website started as a list of questions and answers accumulated during PBC chatroom sessions. Because we answer many of the
same questions when someone newly diagnosed visits, I decided to collect this information and “reuse” it as much as possible. My list
grew over time and the answers got longer. To make the list more manageable, I started replacing long explanations with links to
internet sites where I found satisfying answers. http://www.geocities.com/slsouza@pacbell.net/pbc.html

I was horrified by the number of people we chatted with whose doctors had given them their PBC diagnosis with little or no information
about the disease. Many of these people tried to find information on their own, but it was almost always incomplete and out of date.
Their common experience angered me because it is cruel and unnecessary for a doctor to leave a patient uninformed and frightened.
My little list of questions and answers wasn't nearly enough information to help these people come to terms with PBC. Finally I came to
the conclusion that what most newly diagnosed PBCers needed was a sort of "primer" to get them started living with PBC -- something
bigger and more detailed than the ALF PBC pamphlet, yet small enough not to overwhelm someone seeing it for the first time. The
obvious way to publish such information was on the internet. I discussed the idea with Sarah Kiley, and she encouraged me to pursue it.

The PBC primer sat on my mental "back burner" while I figured out what to include and how to arrange the material. My website has
limited space, so I needed to use it wisely. I finally decided the site needed to provide a representative sample of links to current,
encouraging and reputable information about PBC and ancillary issues, as well as links to resources for patient support. I hope people
use it as a starting point to pursue their own PBC investigation in greater depth.

A little personal history such as your career, what you enjoy most in your leisure time, hobbies, sports, etc.?
I have worked in the semiconductor and telecommunication industries as a software engineer since 1981. I currently work for AT&T in
the Information Technology Operations department. My duties include webmaster, systems analyst, programmer, system/database
administrator, technical writer and occasionally, instructor.

Leisure time activities include cooking and eating, computer games, maintaining my PBC
website, PBC chat, reading, digital photography, computer graphics, traveling, growing
orchids, making beaded jewelry, and any other activity that grabs my attention. I am
currently looking for a kayak to take out in the San Francisco Bay wetlands near my

Any advice to others? Any brilliant ideas or observations you might have?
   • Eat healthy, stay active, keep stress under control and get enough sleep.
   • Know your limits.
   • Avoid negative people because they suck the life out of you.
   • Always have plans for at least one future vacation.
   • Keep living, keep learning, keep laughing.                            Sandra on
   • Ask questions -- lots of them.                                        one of her
   • Prove your doctors wrong by doing better than they expect.           many travel

                                                PBCers Meeting The Challenge

                                                         Transplant Corner

                                                   Organ Donation Myths and Facts
                                                                  By Anne Vertrees

It seems simple enough: Donate organs. Save Lives. Yet many people don’t and many lives are lost as a result. Nearly 6,000 people died waiting
for an organ transplant in 2006 - that’s 16 people per day. If you’ve delayed your decision to be a donor because of a belief you’ve never fully
explored, here are some common myths and concerns.

Myth. If a person is a designated organ donor, the medical team won’t work as hard to save his life. They will give one’s organs to somebody else
as soon as they receive clearance.

Reality. When a patient goes to the hospital for treatment, doctors focus on saving that individual’s life first and foremost, not somebody else’s.
The medical professional in charge of your care has nothing to do with transplantation.

Myth. Some believe that their organs will be harvested without actual confirmation of death.

Reality. The fact is that people who have agreed to be organ donors are given additional tests to ensure they are truly dead rather than to patients
who haven’t agreed to organ donation.

Myth. A family will be charged for donating their loved one’s organs.

Reality. The organ donor family is never charged for donating. The costs of organ donation go to the organ transplant recipient.

Myth. Rich, famous and powerful people receive favoritism and move to the front of the recipients’ list faster than others who need a donor organ.

Reality. The rich and famous are not given priority when it comes to allocating organs. Some believe this is true due to the amount of publicity
and media attention generated, but celebrities are treated no differently than anyone else on the list. The fact is that UNOS-The United Network for
Organ Sharing-subjects all celebrity transplants to an internal audit to make certain the organ allocation was appropriate.

Myth. Some people believe that they are too old to donate their organs.

Reality. There is no defined cutoff age for donating organs. Organs have been successfully transplanted from donors in their 70’s and 80’s. The
decision to accept organs is based on strict medical criteria, not age.
Organ Donation Saves Lives….It’s the Ultimate Gift.

  Southeast PBCers Support Group                                                                                     By Nancy Doughtery

  The Southeast PBCers Support Group is composed of 38 members from South Carolina, North Carolina, & Georgia. We are an active
  group that meets quarterly at various city locations within the tri-state area. We enjoy sharing our PBC information and personal health
  updates, guest speakers, and the business part of our group.

  As many of you have read, our very own Trudy Crossley received a recognition award for her outstanding contributions, dedication, and
  fundraising endeavors. Trudy is our group Project Chairperson and heads up the money making projects for our Southeast Group. She also
  dedicates herself to personal projects and donates the earnings to the Fund for the Cure of PBC. We as a group are very proud of Trudy and
  her efforts, participation, and encouragement.

  We as a group actually put together our own cookbook,
  published it and sold them for one of our projects.
  This produced $2,200.00 for PBC Fund for the Cure.

  At Trudy’s suggestion, we all keep a change jar and
  collect loose change and turn it in at the quarterly
  meetings. This is an ongoing project.

  Our next meeting is Saturday, October 20, 2007
  to be held in Charleston, SC.

  All PBCers are welcome to join us.

                                                     PBCers Meeting The Challenge

                             Melissa Palmer, M.D.                           4. Discontinue cigarette smoking. Cigarette smoking has been found
                             Private Practice Long Island, NY               to be a risk for both liver cancer and liver cancer-related deaths in
                             Specialty: Gastroenterology and                people with hepatitis B and hepatitis C. Although no studies have
                             Hepatology                                     been done specifically on people with PBC, it is reasonable to advise
                             Medical advisory board of the                  discontinuation of cigarette smoking in all people with liver disease
                             ALF New York Chapter                           due to any cause.
                             ALF National Chapter Nutrition
                             Education Subcommittee                         5. Avoid oral contraceptives. Although subject to controversy, some
                             Author of Dr. Palmer’s Guide to                researchers have found that oral contraceptives taken for prolonged
                             Hepatitis & Liver Disease                      periods of time have been associated with an increased risk for the
                                                                            development of liver cancer.

                Doctor Palmer’s Corner                                      6. Maintain tight control of your sugar levels if you have diabetes. It
                                                                            is believed by many researchers that insulin activates certain factors
                                                                            that can cause gene mutations that lead to liver cancer.
                                                                            7. Drink 1-2 cups of coffee a day. Although not specifically done on
Hepatocellular carcinoma, also known as HCC or hepatoma, is one of          people with PBC, studies in Japan found that people who drank
the most common cancers in the world, accounting for 6 percent of all       coffee daily had a 51% lower risk of HCC compared with non-
cancers worldwide. Approximately 500,000 to one million cases of            drinkers.
HCC occur each year. This makes HCC the fifth most common
malignancy in men and the ninth most common in women. Although              8. Lose those extra pounds. Fat is known to be toxic to the liver. In
its rate of occurrence of HCC has been rising over the past twenty          fact, studies done on patients after liver transplantation revealed that
years in the United States, it is still uncommon, accounting for only       those patients with a higher percentage of steatosis (fatty liver) had a
0.5 to 2 percent of all cancers.                                            higher incidence of HCC.

Liver cancer can develop in anyone with cirrhosis, regardless of the        9. Get screened for HCC if you have stage 4 PBC. It is crucial to
cause. However, the chance that a person in the final stage of PBC          diagnose liver cancer in its earliest stage when it is most amenable to
(stage 4 - cirrhosis) will develop liver cancer is rather low. In fact, a   successful treatment. A person may be diagnosed with liver cancer
person with cirrhosis due to PBC is much less likely to develop liver       through a combination of blood work, imaging studies, and/or liver
cancer than a person with liver disease due to other causes such as         biopsy. While the exact method and interval of screening is subject
chronic hepatitis B, chronic hepatitis C, or hemochromatosis (a             to differing opinions, as a general rule, screening is advisable
genetic disease of iron overload). It has been estimated that only          approximately every six months. This is based on the fact that the
approximately 2 - 6 percent of people with PBC will develop liver           time it takes for HCC to double in size ranges from 1-19 months with
cancer.                                                                     a median time of 6 months. Screening generally consists of an
                                                                            imaging study (such as a sonogram or CT scan) and a blood test
There is no simple explanation for why some people with PBC                 known as alpha-fetoprotein (AFP). Since up to 37 percent of people
develop liver cancer and others do not. Most likely, there are multiple     with liver cancer will have normal levels of AFP it is important to
factors involved. Some of these factors, such as diet, may be alterable     take advantage of the newer markers of liver cancer - AFP-L3% and
and others, such as gender are not. Thus, with some lifestyle               des-gamma-carboxyprothrombin (DCP). Diligent surveillance will
modifications, a person with PBC possibly can reduce his or her             detect approximately 25 to 65 percent of tumors at a size of 2
likelihood of developing liver cancer. Note, however, that the              centimeters or smaller.
incidence of liver cancer among people with PBC appears to be
significantly higher in men than in women. Furthermore, liver cancer
has been shown to be a common cause of death in men with PBC, yet
an uncommon cause of death in women with PBC.
                                                                                                      “Dr. Palmer’s Guide to
The following are some suggestions on how to minimize the risk of                                    Hepatitis & Liver Disease”
developing liver cancer.
                                                                                                       Soft cover book includes diagnosis,
1. Get vaccinated. Hepatitis B is responsible for approximately 75                                     symptoms, treatment, diet, nutrition,
percent of all liver cancers worldwide. Therefore, it is important for                                    herbs, exercise & much more.
people with PBC to protect themselves from becoming infected with
this virus by getting the hepatitis B vaccine.                                                           Books donated by Axcan Pharma

2. Avoid excess iron. Iron is toxic to the liver, and can potentially         Send a large cushioned “Self Addressed Stamped Envelope” to
cause gene mutations that may lead to liver cancer. Therefore, unless         PBCers Organization, 1430 Garden Road, Pearland, TX 77581
your doctor has determined that you are iron deficient, it is important
                                                                              Postage required for book & envelope weight of 1 lb 4 oz
to avoid supplementing your diet with iron.
                                                                              US regular first class mail $6.20
                                                                              Priority Mail for special “Flat-Rate Envelope” $4.60
3. Avoid alcohol. People with liver disease due to any cause should
                                                                              Outside US check with your local post office for mailing rate.
abstain from alcohol due to the potentially toxic impact of alcohol on
the liver. Alcohol may accelerate the course of liver disease, leading        Book request must include SASE.        Hurry while supply lasts.
to cirrhosis and liver cancer at an earlier age.

                              PBCers Meeting The Challenge

                                                     Conference walkers
                                                      raised $2,500 for
                                                       PBC research.

                                                     Dr. Claudia Zein and
                                                      Conference Chair
                                                        Carol Roberts

                                        PBC Local Groups
Arkansas:                Judy (870) 425-2153
Alabama:                 Maria (334) 348-2452            wgatap@myefinity.com
Arizona: (Phoenix)       Lynn (602) 938-9448
California: (North)      Barbara (650) 968-9861
                         Victoria (530) 661-3307         massajer@webtv.net
California: (South)      Rhea (818) 380-3100             PBCRhea@aol.com
Colorado:                Shelly (303) 289-8651           seater@greenbar.com
Florida: (SE)            Maxine (561) 969-9000           macarst@juno.com
Florida: (Orlando)       Katie (407) 351-5582            tgregory3@cfl.rr.com
Idaho:                   Deanna (208) 345-3854           thomasatboise.com@juno.com
Illinois: (Chicago)      Ivette (773) 779-7602           IDW87@aol.com
Illinois                 Joyce                           iwryte2@aol.com
Indiana:                 Barbara (765) 448-4348          jhdavies@prodigy.net
Iowa:                    Pam 319-228-8685                maddiesgma@netins.net
Kansas & NE: (Omaha)     Edie (785) 283-4780             ehurtig@twinvalley.net
Michigan:                Carol (313) 562-6037            vajcaltj@aol.com (Jan - Apr) gmarsh@voyager.net (May- Dec)
                         Maureen                         maureencadams@aol.com
Missouri & Kansas:       Becky (636)391-9360             kw0281@swbell.net (KC)
                         Kim (816) 880-6149              MuKix90@aol.com
New England:             Jennifer (413) 796-6931         (Summer months (413) 267-4636) JenK123Ma@aol.com
New Jersey: (South)      Marlene (856) 468-2883          MARELENEfromNJ@webtv.net
New York: (Western)      Carol (585) 225-7845            wnypbcsupport@rochester.rr.com
New York: (NY City)      Mount Sinai PBC Group           (212) 241-5735
                         2007 Meeting Schedule:          Sept 6 & Nov. 8. (6:30—8:30pm)
Ohio: (North Royalton)   Rosanne                         rosdb@sbcglobal.net
Ohio: (Northern)         Beverly (216) 476-4014          Beverly.Maloney@fairviewhospital.org
Oklahoma:                Lynda (918) 747-2291            LSwent@cox.net
Oregon Coast:            Mary Ellen (541) 902-9755
Oregon: (Portland)       Frances (503) 699-9833          evefish37@comcast.net
Pennsylvania: (SE)       Phyllis (717) 367-5651          General367@aol.com
Pennsylvania: (Pitts)    Ellen K. (724) 863-3126         kerber@kerbers.com
                         Carol F. (412) 371-7436         csfoglia60@yahoo.com Meetings monthly 2nd Tuesday
South Carolina, North
Carolina & Georgia:      Joyce (864) 583-7069            tcandjoyce@charter.net
Tennessee:               Doris (423) 989-3214            dls715@earthlink.net
Texas: (Austin)          Fonda (512) 263-9361            fonda@tec-knowledge.com
Texas: (Dallas)          Norma (972) 422-1915            pbcntx@yahoo.com
Texas: (Houston)         Linie (281) 997-1516            LiniePBC@aol.com
Utah:                    Shirlene (801) 393-7059         brixi9210@aol.com
Virginia:                Anne (434) 724-4297             abeard@chatmosscable.com
Washington:              Sandra (360) 708-3350           IMRanch@aol.com
                         Anne (253) 447-7111             Fvertrees@aol.com
Washington DC,
Maryland & Virginia:     Barbara (301) 871-6729          bnoveau@comcast.net
Wisconsin:               Shelby (262) 569-9967           Jimshelbyg@aol.com

Canada                   Canadian PBC Society            Beverly (416) 440-0917 pbcsociety@yahoo.ca
England                  Irene (0208 2473701)            irene.mcgill@btinternet.com
              "Those who are lifting the world upward and onward are those who encourage more than criticize."
              Elizabeth Harrison

  United through education, research & support                                            Newsletter Staff
       Offering help and support since 1996                                   Alynn Stefanko, Anne Vertrees, Buck Brown,
                 http://pbcers.org                                            Joan Miller, Linie Moore & Sharon Goldstein
                                                                                     E-mail: pbcersnl@pbcers.org

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exercise program. The PBCers Organization is a nonprofit                           http://www.cafeshops.com/pbcersorg
support group. We are NOT medical professionals. Our goals
are to offer support, help, information & friendship. Members in                     PBC Awareness Merchandise
the PBCers Organization are liver disease patients, family                       bracelets, pins, car magnets & note cards
members and friends discussing their personal experiences,                          http://pbcers.org/merchandise.htm
views and information of interest to other members.


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