What the PBCers means to me

Some PBCers express what the group means to them

A warm sense of belonging and the place to get information. (Rosalee)

"The light at the end of the tunnel." (Jan)

Caring, sharing and preparing with HOPE...(Anne V.)

This is a lifeline, and the information is priceless!! (Judy - Utah)

HOPE AND LOVE (Judy K)

The PBCers org has given me hope, comfort and knowledge. (Irene)

Education & Understanding - Thanks for all your involvement. (Sheila)

It means I am never alone... (Lauren - SW Florida)

Finally someone else who understands!!! (Marian C.)

Has giving me hope to a future. (Daisy)

Knowledge, Hope, and Fellowship (Donna - CA)

....Would be lost without.... (Doris from Germany)

I love the list. I have learned about PBC from the list - The doctors don't take time to explain things. (Nelda C.)

I was diagnosed 6 months ago. The PBC Digest allows me to gather info so that for each visit with my doctor, I show up with a ton of questions. (Susan R.)

For me the PBCers Organization means information, support and loving kindness. (Janice B. - Seattle)

Support, information, sharing and friendship is what our group means to me. (Heidi)

It is my lifeline to honest, realistic answers regarding my disease. I never miss a day without reading the digest. (Carol M.)

The PBCers organisation to me means truth, information, love, acceptance (me being a man in a woman's world) and support. (Terry D.)

It means education, comfort, friendship and staying connected. (Alice in Lakewood, CO. - PBC, stage 1)

Support, friendship, knowledgeable answers, empowerment, hope. Thank you all. (Annette)

PBCers Org means Information & Support along with the feeling you are not alone in dealing with PBC. (Susan, Florida)

The PBC support group, and daily e-mail make me feel like I'm not alone. I appreciate all the good information that is passed along. (Tish)

Life is what we make it, and Linie you and so many others have made life a lot better for me. Thank you. (Marijane - CA)

Sharing information, and not feeling as though you are the only one with PBC. (Janice - Idaho)

The PBC Organization is a lifeline for me. It helps to read the digest and know that I am not alone. (Nancy K)

PBCers Organization is like a good friend who walks through the door each day and says, "Hello, I'm here for you." (Shelby)

The World. The day I found out I have PBC Nov 27,2000 THIS Digest has been a lifesaver to me. Love and hugs (Melanie-Maine)

For me, the daily digest is a mine of information given in terms I can understand. (Anne F. - England)

"PBCer's have given us all a path to follow when we were all wondering which way to go…as we were all equally scared upon diagnosis… & WE WILL ALL FIND SOMEONE OUT THERE TO LEAN ON"…….. (Carol Q. Novak)

When I was diagnosed with PBC in 1993 I had never heard of the disease or met anyone with PBC. Now each of you are one of my over 1500 caring friends. (Charlotte - IN Lala621@)

I think of the PBCers Org. as a strong and positive lifeline of hope and friendship. A very special bond exists allowing us to share with other PBCers at a level no one else would truly understand. I admire very much all that the PBCers Org. stands for and all the people who made it possible and continue to do so everyday. (Ivette in Chicago)

When I joined the PBCers in 1995, there were about 32 people in the group. I am mostly a lurker. I use the group as my own support group. When things get to be too much, I log on, and there are hundreds of friends that know exactly what I am going through. You can't beat that. Don't ever change. (Polly - MN)

The PBC Organization gives me: hugs, laughter, knowledge, strength, & peace, but most of all it gives me hope to win.... over this disease. (Terri - TX)

The PBCers organization was my guiding light to knowledge and acceptance of my diagnosis. It has given me the wonderful gift of so many friends and has allowed me to reach out to help others who are just beginning their journey following the theory of "Pay it Forward". (Carol - NY)

To this day, if I had not found the Digest, I would still be alone with a disease that I knew nothing about and would feel totally alone. The Digest has given me Information, comfort, friendship, love, and support. I'm not alone anymore. Thanks to all who make in possible. My love and prayers to all. (Ann M. - Maryland)

I appreciate the PBCers organization because they relate to my situation and I relate to theirs. I can learn from the digest, and share what I have learned with people who ask for information. We can both (PBCers and I) give hope and encouragement to those who have been newly diagnosed. (Marilyn D.)

The PBCers 's Organization has brought PBC out of the dark ages and has compiled a sizable useful fund of information. The Digest has a wealth of information which, in order to be used wisely, requires introspective thinking and discrimination. Linie Moore had the bright idea and mobilized the best specialists to answer our questions. (Denise TX)

To me the PBCers Organization means information, support, and friendship. I appreciate those PBCers who have contributed to the formation of this remarkable network. Happy 5th anniversary! (Pat)

It's difficult to express the feeling of finding out that you are not alone with this disease. PBCers Org. is a place where I can give and receive comfort and support. I'd be lost without it. Thank you everyone. (Nancy-NY)

For me, a newcomer (since Sept) I have learnt so much from the discussions of the other members. Joining the PBCERS was one of the smartest things I could have done. I have learnt a lot about the disease. Thanks and keep up the good work. (Joanne from Canada)

T o me PBCers are family. Because the PBC organization is always there for me, with answers, support, honesty and love. I have learned more from this organization than I ever learned from any doctor or medical book! (Pat B - FL)

It's a group that's there day or night, either by chatroom, personal acquaintances or the re-reading of the digest. Keeps the disease in perspective & let's me know I'm not alone. (Sharon S. - dx'd 1985 & still going 'fairly' strong!)

The PBCers Organization has given a new meaning to my life. The first day I found all of you, I cried. I didn't feel so alone. I was getting answers to my questions and finding friends at the same time. I am very lucky to be a part of the PBCers. (Bonnie_NY)

PBCers organization means knowledge, hope and life. When I feel exhausted from this disease I can go to my digest and receive the knowledge and hope I need to live with PBC. (Pamela O - CA)

It is my life line I feel all alone and then I go to the computer and there all these wonderful people are who know what I am going through I have a great husband and children but I can't keep falling apart on them. Thanks for being there. (Maureen J in Mass)

I enjoy the PBC support group mail very much!! I like to read about others as to how they handle having PBC and what meds. and other things to do to cope with the illness. (Pam R)

PBCers is a vital link for info and support that I haven't been able to find elsewhere. The group is a special "gift" by knowing that I and my family are not alone in this "great adventure". (Nan, Chandler, AZ dx 12/2000, stage 2, RA)

Although I choose not to post messages, I read for knowledge, support and most of all for the opportunity to meet PBCers in Atlanta. PBC has changed my life in many ways and some of those ways are very positive. I have learned to stop and smell the roses! As Martha Stewart would say, "That is a good thing". (Gayle K.)

For me the PBCers has been about information, validation, friendship, and survival. I learned that I am not dying; my life was handed back to me. To those that started this group & keep it going thank you with all my heart...(Karen - BC)

Fantastic group!!... Helpful, caring and very informative. I read the digest every day and have learned so much. Thanks for all your help. ( Joy F in PA - stage 4)

This group means that when I get scared and no one else seems to understand my fear of this disease, I can come here to turn to those who do understand. It is my safe haven for this disease... (Ann MN)

"The PBCers digest has helped me to understand the variety of problems associated with the disease and how to cope with them, I no longer feel that I must be neurotic, as was indicated by people who had no knowledge of the disease, I cannot thank the digest enough for the information, support and belief in a good future for us all." (Roseina)

The PBCers has become a part of my life for the past 4 years. The information has been bottomless. The people I have met are "Angels" and I Thank God for putting them in my life. The Love and Concern shines in all their words. (Madeleine)

PBC Organization is a Godsend, I am not so afraid of this disease anymore, the sharing and oneness of all who correspond gives me the strength I need to face one day at a time. (Sylvia, Philadelphia PA)

Purposeful

Brave

Caring

Encouragement

Relief

Support

This is my definition of PBCers. (LindaML - TN)

The PBCers Organization is a 21st century model for medical and social change: Through this online group, a person newly diagnosed with PBC no longer must live in isolation with a rare, progressive, and potentially fatal disease; rather, we can share this challenging and often stressful experience with others who are thoughtful, compassionate, and proactive about medical care, treatment options, research, and social support. This special group offers strength just when you need it most. (Ellen S. - Atlanta)

PBCers means that I can assimilate with other people who suffer with PBC and not feel so alone. Helps me to understand the symptoms I suffer are common with this disease and gives me peace of mind. It has also provided me with the information I so desperately needed to help me understand this disease, as there was none available to me when first diagnosed. I have only ever posted one note but have comfort in reading the digest daily. (Suellen)

It means

...I'm not alone

...I'm not crazy with these symptoms

...I can ask any question without fear of reprisal

...I can grieve in others and my sorrow

...I can rejoice in others good fortune

Christine Walters (Colorado)

For the first time I feel that I am connected with others who have the same desire to cure this thing. This reduces the fear factor and gives me the courage to ask the hard questions of my doctor. PBCer's is a source of information, concern, sympathy, empathy, righteousness, humor, blessings and friends.

The PBCers Organization is a source of information about PBC, and a way to share ideas and feelings. It gives me emotional support so that I know I am not alone in this disease. (Marian B.)

I find the digest very informative and helpful. Do not post or chat but that doesn't mean that I don't appreciate the organization very much. It's difficult for a Canadian on an senior's pension to contribute in American dollars to the funding projects that are mentioned. The exchange rate is brutal presently. However, I'm glad I found this site and it's been a boon. Keep up the good work. (Sally - Calgary)

Life support, it means a great deal to me. I don't think there are words to express my thankfulness at this time of year for all the support, information, and friendships through this organization. My deep appreciation for all those whose who give so much without any recognition, God Bless. To the Lady who started this, you are truly an angel. May we soon find some answers with our perseverance. May we all find through it all courage, understanding and most of all love for one another. (Rita - IL)

I'm new to the PBCers but this organization has helped to answer so many questions that I had on this disease. When I was first told I had PBC I thought it meant a death sentence for me but have learned through this organization that isn't necessarily true. For that I thank you for being there for me and everyone else who learns they have this disease and find you and know we are not alone. Thank You (Polly - IN)

Hi, I don't usually post anything into the Daily Digest, but its is the first thing I look for on my computer every day, when I log on. I really appreciate all the hard work that is put into its publishing every day. It makes me feel less alone. I haven't met anyone with PBC, apart from my mother and sister who is having more tests, this way I get to know that I'm am not the only one having some of the nasty side effects. I was diagnosed in September 1990 and found this site in May 1999 and it has been a great help and comfort. ( Doreen G. - NSW Australia)

You, my dear PBCers have provided me with a great source of hope, a wealth of information on liver disease, and a shared interest in finding a cure for PBC. At the June 2001 Conference, Janice Hurst reminded us that we can cope best by uplifting others and she is right; it is impossible to help another deal with PBC without uplifting our own spirits. Thank you one and all--you inspire me daily! (Darla - NY)

A lifesaver. Probably not unique... ok... What the PBCers Org has meant to me is that my sister (and I) don't have to live alone with this rare disease. We don't have to live our lives in fear of the unknown. We have a place we can go to get information, share experiences, give and receive support. It has meant we can live our lives to the fullest because we are no longer in the dark about what might happen. It means we don't have to worry about her treatment plan because we are kept up on the latest developments in research. We have assurance of hope, support, and many new friends. It means a new life to some of us who have felt our world, as we knew it, end. (Jori)

If I had to say it in one word I couldn't, but to say it in a sentence, I would say, "The PBCers gave me back my life through education and being back in control of what happens to me through keeping a notebook and asking questions of my doctors that I didn't think I had the right to question." Guess that's a run on sentence, but I tried. Thanks Linda, Linie, and others for all you do to make this organization "enable others"! If I had to say it in one word, then, maybe that one word would be "Ennoblement"! You Have A Friend With PBC In Pennsylvania, (Phyllis)

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