The PBC Foundation is the only UK organisation exclusively dedicated to providing support and information to those affected by PBC
What is PBC?
PBC is a long-term autoimmune disease that affects the liver. In really simple terms, the body thinks the liver is a foreign object and tries to destroy it using bile. It is not related to alcohol or drugs and, at the moment, is incurable. However, there is treatment to slow down the progress of the condition.
Why do I have it?
Firstly, it is important to know that you don’t catch PBC. For PBC to develop, two things have to happen. The first thing is that you have a genetic predisposition. Approximately 25 different areas within your DNA have been linked to PBC: some are linked to autoimmune disorders generally, and some are PBC specific. Assuming that you have this genetic predisposition, you then have to encounter a trigger. Triggers vary from person to person, and could be anything from viral, bacterial, chemical or even a traumatic experience.
Can I pass it on?
No. PBC cannot be passed on like a cold or the flu. It is possible that you could pass on the genetic predisposition to your children, but not PBC itself. If you look at your family tree, you will often encounter other autoimmune conditions such as diabetes, rheumatoid arthritis and osteoporosis. There is less than a 5% chance that your children would develop PBC too.
Didnâ€™t this used to be called Primary Biliary Cirrhosis?
Yes. The name has been changed to Primary Biliary Cholangitis because it is more representative of what PBC is. The term ‘cirrhosis’ has many negative connotations in the public mind, and is often incorrectly assumed to be related to alcohol or drug abuse. With PBC, this is not the case. Additionally, 85% of people diagnosed with PBC never develop cirrhosis, making it an inappropriate title for the condition.
What is AMA?
AMA stands for Antimitochondrial Antibody, and it is the diagnostic tool for PBC. It is 95% accurate although there is such a thing as “AMA Negative PBC”. There isn’t any difference between the two strains, other than how it is diagnosed. A titre of over 1/40 with other presenting issues could be enough to confirm PBC.
What are LFTs?
LFTs stands for liver function tests. LFTs, bloods, liver biochemistry or liver function all allude to the same thing. They are a series of tests which measure the function of your liver. Bearing in mind that PBC is a long term condition, any one set of tests are not going to have an impact on your care or how your specialist views your PBC. Your specialist will be looking for patterns over many years to see where and how your liver is functioning. In terms of your LFTs, there are many factors that will change your results that have nothing to do with PBC: whether you have fasted, the time of day the tests were taken, etc. So, it’s important to look at LFTs over a long time and not focus on a single set of tests.
If my bloods/LFTs are stable, why are my symptoms changing?
There are three aspects to PBC, and each of them needs to be monitored in different ways. First, there are your symptoms. These can be cyclical and go through phases. So, these may need to be monitored month to month, week to week, or even day to day. Your symptoms are not necessarily linked to the other two aspects of PBC, so if your symptoms are getting worse, it only means one thing: that your symptoms are getting worse.
The second aspect is your liver functionality: how effective your liver is at doing what it needs to do. This does not really correlate with your symptoms. There are many factors affecting your LFTs and not all of these are to do with PBC. These are generally monitored every 6-12 months, dependent on where your PBC is.
The third aspect is cell change within your liver, or “histology”. This is to do with where your liver is with regards to any damage. Normally, this would be monitored every 3-5 years, depending on your circumstances. Again, this doesn’t relate to either your counts or your symptoms. There are people who have a cirrhotic liver who remain asymptomatic and people with normal counts whose symptoms are a daily distraction.
These aspects make it
a) difficult for doctors to fully interpret
b) important to monitor all three
What is â€œUrsoâ€
Urso or UCDA or Ursodeoxycholic Acid is a naturally occurring bile salt. It is given to PBC patients in order to flush bile out of the liver, thus slowing the progress of the damage within the liver and the progress of PBC. It is a lifelong medication. It is prescribed in the amount of 13-15mg/kg, so how much Urso you take will depend on your weight.
What is â€œstagingâ€?
Staging refers specifically to your histology or liver damage. It ranges from stage 1 where there is very little cell change through to stage 4, which indicates cirrhosis. There are a couple of important factors to consider when using this terminology:
1) Technically, stage 1-4 of PBC don’t actually exist, but is a term created sufferers
2) Which stage you are at is general and of little real informational value to your clinician
3) Cell change happens in pockets, so the damage is not consistent throughout the liver
4) Biopsies, to stage, are generally not required, there are exceptions for all. 85% of people with PBC will never develop cirrhosis
How long have I got?
That, we don’t know. Statistically, you are far more likely to die ‘with’ PBC than ‘from’ PBC. PBC is generally a long term condition for all there, although there are occasional cases where the PBC progresses at a quicker rate. However, this still tends to be in years rather than weeks or months. We have many members who have been diagnosed for over 25 years, and that will continue to be the case as earlier diagnosis and Urso combine to affect the histories, inaccurate prognosis figures.
Who will look after me?
This will depend on your PBC. Our preference is that you have access to a PBC expert, whether at a District General Hospital or at a specific liver unit. Your care will vary as the years go by, but the key thing to know is that each patient has a huge part to play and can make an enormous positive effect on their own PBC by making the best decisions for themselves, mainly within the lifestyle sphere.
Will this affect my travel insurance?
Enquiries regarding travel insurance are frequently received in the PBC Foundation office. Whilst we can provide a list of companies to contact, this does not constitute a recommendation. Some have successfully obtained insurance from the listed companies, while others have been refused. There may be several reasons why this occurs, as each company has its own acceptance criteria. Sometimes this has nothing to do with PBC, as companies can be unwilling to insure anyone under 21 or over 65.
When looking for travel insurance, we strongly recommend that you are honest. If you don’t inform the insurance company of all the relevant details, including that you have a medical condition. If you don’t, they may decide that you’re not covered when you need it most.
It may be useful for you to use an insurance broker, as they have access to a range of insurers and usually know which insurers cover which conditions.
Who are the PBC Foundation?
The PBC Foundation is the only UK organisation exclusively dedicated to providing support and information to those affected by Primary Biliary Cholangitis, an autoimmune liver condition with no known cause or cure.
We have four full time and two part time staff, eight board members and fifty volunteers around the country.
What does the Foundation do?
• Provide PBC sufferers with accurate, up-to-date information on PBC, its implications, and treatment, in the form of our publications, including ‘Living with PBC’, The Bear Facts and our website.
• Provide support to all affected by PBC – including patients, their carers, concerned relatives, and friends – in the form of a helpline, a regular publication, regional meetings within PBC sufferers’ local community, and a volunteer network throughout every region of the UK.
• Educate medical practitioners about PBC, and to raise awareness of the services we provide, by distributing detailed information on PBC at medical events throughout the country, and by conducting extensive outreach work.
• Work with other bodies to conduct research into PBC to find a cause/cure.
What is the best way of collecting funds for an event Iâ€™m running?
The best way of collecting funds is by using the online fundraising platform, JustGiving, which automatically collects both funds and gift aid on our behalf.
Alternatively, we can supply donation boxes, sponsor forms etc. and you can collect the funds in person before sending them to us.
What is the best way to send in funds Iâ€™ve raised?
If you use JustGiving this is automatically transferred to our bank account. Otherwise, the best way is to send us a cheque with a short note explaining how the funds were raised. Cheques should be made out to The PBC Foundation.
What is my money used for?
Donations are used to fund our core activities e.g. the helpline service (both via phone and health unlocked), volunteer services, the Bear Facts, etc.
Iâ€™d like to make a general/specific donation, how can I do this?
You can donate online by visiting this page (www.pbcfoundation.co.uk/donate.etc), by calling the office on 0131 556 6811 or by sending a cheque made payable to The PBC Foundation to us at 2 York Place, Edinburgh, EH13EP with a short explanation.
Can I use the PBC logo when advertising my event?
You can, but it depends on the individual circumstances. Contact our office on firstname.lastname@example.org or call 0131 556 6811to discuss the matter.
Can I advertise my event on your website/social media?
You can send us details of your event and if appropriate and not liable to represent a conflict of interest, breach of neutrality or such like we will try to feature the event.
How can I get in touch with the Foundation?
Phone: 0131 556 6811
Mail: 2 York Place, Edinburgh, EH1 3EP
How much is membership?
Membership is free.
What do I get for becoming a member?
Access to services, meetings etc.
I donâ€™t have PBC, can I join?
Absolutely, we have many members who don’t have PBC. Follow this link to sign up.
When does the next issue of â€œThe Bear Factsâ€ come out?
“The Bear Facts” is released quarterly, with a Winter, Spring, Summer and Autumn edition. The exact date of each issue varies year on year.
I donâ€™t have e-mail, can I still become a member?
Yes, just call the office on 0131 556 6811 and we’ll send out your membership pack
What is Health Unlocked?
This is a forum where members are able to ask each other questions with regards to symptoms, treatments, approaches and such from all around the world.