This gives the group members space to share their lived experience, talk about self-management and share techniques to help each other.
The group has been running for five years in May 2018; it has been proven that attending self-help groups reduces* Doctor and Hospital Appointments this takes pressure away from the National Health Service.
Also, we talk about participating into clinical trials into research for PBC; this gives my members assurances before signing up and taking part in such studies.
What Is PBC?
Primary Biliary Cholangitis (PBC) is a long-term auto-immune condition with no known cause or cure* which affects the liver. The body’s immune system thinks that the bile ducts within the liver are foreign objects and tries to destroy the lining of these ducts.
The bile ducts in the liver are designed to allow the flow of bile from the liver, when PBC is present damage to these ducts leads to poor drainage of bile acids.
The bile acids in the liver then leak from the bile ducts this damages the surrounding liver cells, this causes inflammation and damage to the liver, many people with PBC never develop cirrhosis.
PBC mainly affects nine women to every one man and is considered to be a genetic condition, my grandmother died in 1968 the cause of death was liver cirrhosis at the time PBC was not really known about, and her cirrhosis was put down to the medication she was taking for her other health conditions.
What Is PBC
The cause of PBC is not linked to alcohol and drug abuse; it is an auto-immune disorder. Once the body’s immune system starts to attack the body the risk is higher to develop other auto-immune disorders.
PBC is diagnosed using ‘AMA’ blood test as known as AntiMitochondrial Antibody; this is statistically 95% accurate.
The Liver Function Test (LFT) when PBC is present is usually, high this is an indication that there is damage to the liver, my LFT was high for many years when I had blood tests and was never pursued. Several years later it was investigated, and PBC was diagnosed following a liver biopsy.
A liver biopsy can be risky, it is used in some cases to diagnose and is very helpful for staging the disease. Diagnosis can be difficult, and many sufferers are not well informed about their condition.
Symptoms
The two main signs or indication of PBC are Itching (pruritus), lethargy and chronic fatigue, some people do not have any symptoms at all. Chronic fatigue is very difficult to manage especially when you are at work (PBC is a disability, and some people have to give up working).
Although there is medication for PBC it does not help with the fatigue, you have to learn to manage this by conserving your energy levels and taking regular exercise, since being diagnosed I have taken up power walking which helps me immensely.
There is medication for the itching which is called Questran this is a powder that must be mixed with food or liquids. Possible related symptoms include dry eyes and/or dry mouth (sicca syndrome), joint pains and diarrhoea.
When liver disease is advanced, the complications include jaundice, easy bruising, reddened palms, swelling ankles and swelling of abdomen.
Medication
Medication
When PBC has been diagnosed, Ursodeoxycholic Acid, offered to the patient, this is the only known and approved medical treatment which is available currently.
This medication is, bile salt that changes the bile so it can be drained from the bile ducts in the liver, this slows down the development of the circumstance in phrases of cellular change and frequently results in decrease* LFTs.
Unfortunately, not all patients with PBC respond to Ursodeoxycholic Acid research is ongoing to find alternatives.
Patients who had responded to this medication are called Urso Responders and are considered to rejoin the overall population regarding life expectancy. A liver transplant can be offered when there is liver failure present, is has also been given to patients who are finding it difficult to cope with the fatigue and is having a massive impact on their lives.
Unfortunately having a transplant will not stop developing PBC again and some patients have had more than one liver transplant, and it has returned again.
PBC can’t be passed on like the flu or cold. There is a probability that you could pass on the hereditary inclination to your kids however not PBC itself.
In the event that you investigate your family tree, you will frequently experience other immune system conditions, for example, rheumatoid joint inflammation and diabetes. There is a less than 5% chance that your kids would have PBC as well.
PBC is altogether different in all patients especially like the way some react to the medicine and some don’t. Measurably patients are much more prone to die with PBC than from PBC.
Conclusion
It took over five years for me to be diagnosed with PBC, this included several visits to my Doctors and saw three different Consultants.
I understand that PBC is a rare condition and the presenting symptoms are very similar to alot of other illnesses and long-term health conditions.
When I finally got diagnosed I had not heard of PBC before; I felt relieved as I knew there was something not right we know our own bodies.
I feel very positive about the future and during my PBC journey have met alot of lovely people with PBC and their family and friends.
I am very passionate and dedicated to raising awareness and would like to help others to receive an early diagnosis this is better for the patient and the NHS to be given Ursodeoxycholic Acid and join the general population of life expectancy rather than receive a liver transplant or develop liver cirrhosis.
It is, for the most part, a long haul condition, in spite of the fact that there are rare situations where the PBC advances at a faster rate. However, this still has a tendency to be in years as opposed to weeks or months. There are a few patients have been living with PBC for more than 25 years and more.
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