Over the years many volunteers have helped the PBCers Organization by giving their time and energy, making our group what it is today. We call our volunteers the Angel Team because they are true angels. They work tirelessly helping and supporting PBCers around the world. Many thanks to all of our volunteers for their commitment and dedication. Meet some of those Special Angel Team Volunteers below.
IL, Diagnosed 1993, Stage Post Transplant
Board of Directors
I just turned 67 (wow) and in a couple of weeks I will be celebrating my 17th re-birthday – the anniversary of my liver transplant.
It’s hard for me to imagine that it has been 24 years since I was first diagnosed with PBC back in 1993. So much has changed since then – with regard to our group, with PBC and transplantation advancements and with me!
I’ve been with the PBCers since the beginning and even before that when we were a small group of people with Autoimmune Liver Diseases on a List-Serve. Creating the group was a a literal god-send for thousands of people and we all have Linie to thank for that. Her vision and the ability to pull it all together without ever having any professional experience with creating such an enterprise is truly inspirational. I remember how lost and alone I felt during my diagnosis. PBC was rare and obscure. Back then in 1993, there was no internet and any information there was on PBC was in medical text books! Having a group of people to talk with and share information and advice was priceless.
I got very involved with the PBCers and led its research and fund raising initiatives. I was able to share and our story with the ALF and world class researchers which resulted in a collaboration that has lasted for years and sparked research grants and continuing exploration of PBC. My transplant surgeon even agreed to send my PBC liver to Eric Gershwin so that his team could study it. It all gave me a purpose which realigned of my view of life, my disease and what it all meant.
The PCBers has been an incredible personal journey for me and resulted in profound changes in my life. I met Linie and watched the PBCers grow from a collection of 6 or 7 to the thousands we are today, a bona fide not-for-profit corporation and international community of people with PBC, researchers, scientists and those who care about us. And technically not cured – there still is no cure for PBC – my transplant has given me a second chance at life. I’m now helping to launch a website called Its All Good Here (itsallgoodhere.com) – a patented technology platform based on the science of neuroplasticity that helps people create happiness and positivity in their lives. That’s where this has all led me.
The advice that I would share with each of you is to be positive. Surround yourself with positive people and positive thoughts. Educate yourself, learn from the experience of others and regardless of obstacles and challenges, do your best to enjoy life every day.
WA, Diagnosed 1993, Stage 1/2
Both my mother and aunt had PBC. In l993, three months after my mother died I went to the doctor and asked to be tested. I was 52 years old. I was told PBC was not genetic but was more common in families where one member has previously had the disease.
When I found out I had PBC I can remember walking out of the doctor’s office with tears streaming down my face. I didn’t have the shock or disbelief so many have when they find out they have a rare autoimmune disease. A disease with no known cause or no known cure except a transplant. I knew about the disease and what it could do.
Telling my family was the hardest part because, at that time, I had not found the PBCers. I felt very much alone and feared my daughter would know the possibility of it being genetic.
I was diagnosed at a very early stage. My doctor had just returned from a sabbatical at the University of Washington in Seattle where he studied liver diseases. He suggested I participate in a new study and I was in the study from 1994 – 2003.
I also have sarcoidosis, hypothyoid which are both under control with medication. In 2011, I had a pacemaker/defib placed in my heart because of heart problems.
We purchased a computer in l997 and I found the PBCers support group. I wasn’t alone anymore. Knowing there were others out there who knew exactly what I was going through gave me tremendous strength. And I learned that my attitude was one thing I could control. I could be a victim or I could be a survivor – it was my choice. My choice was to be a survivor. I have become very involved in the PBCers Organization and helped in whatever way I could.
I am now 76 years old. It has been 24 years since I was diagnosed. During that time I lost a spouse, re-married and watched my granddaughters grow up, get married and am the great grandmother of five.
AZ, Diagnosed 1994, stage 2/3 overlap
Executive Committee & Advocacy Committee
I started my journey like most of us, with a visit to the doctor unrelated to anything to do with PBC. Ran some labs and they came back elevated. At the same time the Urso dosage study was getting started. My doctor referred me to Mayo Clinic in MN. I had a Biopsy and was staged in 2/3 overlap. Once a year, we would make the trek up to Minnesota to my annual exam.
I found the PBCers online in ’97. I got involved in a chatroom with 3 other PBCers, which later became the PBCers chatroom. We helped Linie organize the first bi-annual conference, which we still have today. It was great to meet people in person that we spent time with in the chatroom.
I carried over my hobby of quilting to the group, and made four guilt tops with personalized squares from numerous PBCers. A few years later, one of the quilt tops was pictured on notecards sold in a joint endeavor with the American Liver Foundation. It’s hard to believe so much time has passed, and it’s been 22 years since I was diagnosed with PBC.
Our organization has accomplished a lot in these last 20 or so years. We were finally able to change the name to Primary Billiary Cholangitis, which helped remove the stigma associated with PBC. Also, the first new medication in over 25 years was FDA approved in 2016. It will be a great help to slow the PBC progression especially for those who can’t take Urso.
Being an advocate for PBC has brought me through the loss of my husband 5 years ago. I’m stronger than I ever dreamed of being 5 years ago. John was my strength and support, but I’m my own advocate now for all of my PBC friends.
I’ve worked throughout these last years closely with Linie and the other “Angels” on different projects and committees. Helping to advance and educate all about Primary Billiary Cholangitis
NY, Diagnosed 1999, stage 4 then and now
Executive Committee, Advocacy Committee & Conference Organizers
I was diagnosed with PBC in 1999 after 9 months of searching for an answer to why I felt like “crap”. I was jaundiced, itched and was exhausted. I had a stressful job, a 14-year-old daughter at home and a 19-year-old daughter away at college so I assumed my fatigue was from that as well as the need for a hysterectomy.
After the diagnosis, I joined the PBCers that same year and attended my first PBC Conference in Las Vegas. While there I met several other women, who were diagnosed at about the same time and stage as I was. I mention this to show how this disease affects us all so differently. Today two of us are still at stage four 18 years later, one has been transplanted and doing well and the last received two transplants and did not survive.
I had a response to URSO but it never “normalized” my LFTs. They remain slightly above normal but not high enough to get me into clinical trials! Over the years, I have encountered a few complications (varices, ascites that needed draining) which were all treated. That was exactly what my doctor told me when explaining my treatment plan at stage 4. Every 6 months I see him, have labs drawn, and alternately do a n ultrasound or CT scan. He said we will treat complications of cirrhosis as they come along until we can’t and then will look at transplant if necessary. So far that hasn’t happened and since I turn 65 this year I plan to leave this world with my “original” liver.
When so many suffer so much with PBC I sometimes feel uncomfortable sharing my story but have realized that since we are all affected by PBC differently sharing my story can offer hope to some. Since I am fortunate enough to be able to remain active I have chosen to work within the PBCers Organization to help fundraising for research, raise awareness of PBC as well as support other PBC patients however I can. I do this for everyone affected by this disease but especially for my many good friends who are no longer here.
CA, Diagnosed 2006, Stage 4
Executive Committee, Advocacy Committee & Digest Moderator
I was diagnosed with PBC after elevated LFT’s since at least 2002. One day in late 2006, I awoke with horrific itching, from head to toe and everywhere in between. The doctor I saw thought it was allergies but just to rule out “this rare autoimmune disease”, he ran an AMA2 test. I got a call several hours later saying it wasn’t allergies, it is PBC. In March of the following year I had a biopsy and it confirmed “very early” Stage 1 PBC. Since then, despite taking Ursodiol daily, I have progressed to Stage 4 (reason unknown – but this is atypical for progression). I am incredibly lucky and blessed to live in close proximity to two of the most knowledgeable doctors about PBC in the world, Dr. Gershwin and Dr. Bowlus both from U.C. Davis in northern California. I have donated blood for Dr. Gershwin’s research ever since diagnosis. I’ve also participated in two of Dr. Bowlus’ studies to date. I hope to enroll in a new study in 2017 for a possible new treatment of pruritus (itching).
Fatigue and pruritus are the only symptoms I have all along, and both have been life changing for the quality of life I have. My fatigue is severe and there are days when I only have a small number of spoons (refers to “The Spoon Theory”). I continue to live each day fully, and am committed to patient advocacy, and research of the cause(s) of PBC, including someday… a cure.
I joined the PBCers Organization shortly after I found out I had PBC. It’s been a tremendous asset for me throughout my PBC journey. I have met amazing PBCers from around the world and made true friendships. The PBCers conferences and local meetings give me a chance to give back some time and energy to the organization that is instrumental as well as a passion for me. I am an active patient and advocate for PBC and serve on several committees within the PBCers Organization. I am also a National Patient Advocacy Committee (NPAC) member and Social Media Advocate for the American Liver Foundation.
I am married to my high school sweetheart, and have two grown children, a son and a daughter. I am also a grandmother to 5 grandkids (soon to be 6 – with a little boy will join the family in late April 2017). The kidlets as I call them, range in age between 19-3 years old. My other passions are sailing, scuba diving, and exploring the Pacific Islands and learning about their cultures.
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