Testimonials
“I am very fortunate to have found the Foundation, because here in America I have not found a support group. The PBC Foundation has brought sanity into my life.”
USA
“I would like to say a big thank you for the information pack you sent me. I did not have a clue what PBC was, even though I have been a nurse for thirty-five years. The diagnosis really worried me, but things make a lot more sense now that I have read The PBC Foundation leaflets and magazines. I had very negative thoughts at first but realise now that it’s a matter of taking each day as it comes and remaining positive. Maybe I’ll be one of the lucky ones that don’t have too many symptoms. I must admit I am very glad to have a diagnosis at last for obvious reasons I know from the leaflets and magazines we’re all the same in that way. Thanks again, I am so grateful.”
East Yorkshire, age 52
“I enjoyed the last PBC Conference we went to, we found it very helpful and interesting and it helped us to understand PBC more. I have had PBC since 1982 and being a member of The PBC Foundation now has really helped and it’s very re-assuring that there is always someone I can talk to if I need to.”
London, age 69
“Thank you for sending me the PBC information pack. I was so pleased to get it, also the magazines which I have read with interest and will be reading again. I am so grateful for The PBC Foundation as I was feeling so dreadful at the time and when I got in touch and have read all the information in the magazines I didn’t feel alone anymore and have felt so much more confident since.”
Bedfordshire, age 67
“Thank you for your letter, it was very good to hear from you and to receive the package of leaflets and back numbers of “The Bear Facts”. As I have only recently been diagnosed, after a year of tests for who knows what, I am in one way relieved and in another completely bewildered to be told I have PBC, not having heard of it before and not knowing what to expect. My son tells me that knowledge is power, so now I am feeling empowered. May I just say thank you for being there and I look forward to the future with much more confidence.”
Essex, age 76
“Thank you for all the good work you do, it’s fantastic. I always look forward to receiving “The Bear Facts”, I think my Consultant wants to read it, he might learn something.”
Tyne & Wear, age 59
“Thank you for your letters pages. I was diagnosed with PBC in October 2003 and felt really isolated until I called the PBC Foundation. I felt so much better knowing other people had my illness and know what I’m going through. I have all the symptoms and its hard to believe you can look so well. ‘The Bear Facts’ is a lifeline to people with PBC, it gives you so much information and i love reading other people’s letters.”
Manchester
“Many thanks for the latest edition of ‘The Bear Facts’. I was diagnosed with PBC in 1998 and also have rheumatoid arthritis. I have lots of good days, but some not so good. I look forward to ‘The Bear Facts’ as sometimes it can be a lonely time as PBC is not that well known. Thanks very much and keep up the good work.”
County Galway, Ireland
“Thank you for all the copies of articles on PBC and ‘The Bear Facts’ magazines you kindly sent me. It has changed my world, I now realise I am not alone and face up to things as part of the PBC.”
Dorset
“After months of grief, tears, fear and desperation, I feel that with The PBC Foundation, I have access to the best in health care, advice and support with my PBC.”
Birmingham, age 38
“In the past nine months, in my capacity as a Volunteer and a patient, I have had the occasion to meet Consultants and professionals from the King’s College Hospital, London, the Royal Free Hospital, London and the Queen Elizabeth in Birmingham – three of the top liver units. I was most gratified and impressed by the high regard they all hold for the PBC Foundation as a body that supports and champions for patients suffering from PBC. This is due in the main, to the hard work and dedication of its Directors, Chief Executive Officer and the staff in Edinburgh.
Our grateful thanks must go to all of the for putting PBC on the medical map.”
London
“Thank you for your interesting and supportive magazine. I hope you are all continuing in your very important work for PBC sufferers and will always find the energy and empathy for it!” Germany
“This January my world seemed it was falling apart after being diagnosed with PBC. I, like many others, have been through most of the emotions this involves. I found your address etc on the print out received from my GP, and sent off to join your foundation. Within days the “Welcome Pack” arrived. It was indeed very welcome and I couldn’t believe how much better I felt inside after, spending the afternoon reading all the back copies of the Bear Facts and information sheets.Thank your support and hard work.”
Kent
“Please can you send me leaflets. The Staff Nurse for whom the leaflets have been requested wants them for training purposes for students on the ward, as no-one has heard of PBC. Why am I not surprised. I am awaiting assessment for a possible transplant, so please wish me luck.”
Lancashire
“My husband and I can’t thank you enough for helping to save my life. If you hadn’t told him to get me over here for treatment, who knows what would have happened to me. The doctors in the States led me to believe I was doing okay. They couldn’t even have put me on a transplant list until I was on my deathbed and then once you’re on the list, it’s almost a four year wait. What a wonderful thing you have done for thousands of people by starting The PBC Foundation. You really are a blessing from God to many people.”
Northamptonshire, age 56
“I have found your help and advice invaluable. I found that reading about other members’ experiences with PBC helped me to adjust and explained the condition to me in a way that I could understand. Just knowing that there were other people out there who were sharing my experiences and going through what I was going through made me feel a whole lot better and I can’t thank you enough for the sterling work you are doing.”
Dorset, age 36
“Thank you for everything. Knowing you are there gives me hope, the one good reason I need to keep me going each day.”
London, age 65
“My mother and sister, from Northern Ireland, attended the conference in Inverness recently. I was not able to attend the event myself, but feel, on the back of their feedback, that I want to extend thanks to The PBC Foundation for providing a forum where my mother and consequently our family, are now more informed about PBC. I know that they were heartened by the people they met and by the courage and humour shared. Once again, I want to extend my gratitude to you and all the team for your work in demystifying PBC for my mum. Thank you from the bottom of my heart.”
via Email
“I would just like to say how helpful in explaining my sister’s condition I found this site to be, bringing me closer to understanding her condition as well as being able to give her a little more support through understanding more about the symptoms of PBC, made it easier to understand why she feels the way she does. Through that, I hope to give her more love and support to give her strength to keep a little more positive may be. Well, I certainly hope so.”
via Email