feeling overwhelmed going to tell my to boy... - PBC Foundation

PBC Foundation

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feeling overwhelmed going to tell my to boys today about my diagnosis 😔

Eppy profile image
Eppy
5 Replies

Any tips they are both Adults

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Eppy
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5 Replies
iagra profile image
iagra

Just say that PBC is a very slow progressing auto immune liver disease. Many don't have any symptoms, or only mild symptoms and live long lives. The saying goes - you are likely to die with PBC, rather than from PBC. Be positive and don't change your life, do all the things you normally do. Stay on healthy diet and be as active as you can be. Do regular check ups, take your medicine. We all go through the initial shock. It's not a good thin to have liver problems, but, if you stay positive, you'll be able to live full life and be productive. Wishing you well.

HB70 profile image
HB70

I was scared at first but two years on I'm living life as normal and am relatively symptom free on Urso. There are some really good leaflets from the PBC foundation about explaining the condition to others. Helen

butterflyEi profile image
butterflyEi

Welcome to the group.

With regards to telling your boys I think it depends on how early or late your PBC has been caught and if you have already started URSOdeoxycholic Acid. If you have symptoms such as fatigue you may need some help from them with jobs around the house but in general if PBC is caught early and you respond to the URSO then it is best to live your life as before. As the others have said a good healthy diet and exercise benefit our health. The PBC Foundation has leaflets which you can download, their website is full of up to date information and this coming Thursday they are hosting a Q&A with Professor Neuburger, details are on the website.

good luck, come back and tell us how you got on.

Eppy profile image
Eppy in reply to butterflyEi

Hi Thank you for replying very helpful

It wasn’t as bad as i thought both took it well and told me not worry

They are both adults but i call them boys 🤦🏼‍♀️

gillrich profile image
gillrich

The pbc foundation has a great leaflet explaining pbc to children email Cheryl @Pbcfoundation.org.uk and ask for their leaflets esp the one for children and they will also help you in this discussion .I am in my 20 th year of pbc panic not xx

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