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PBC Foundation
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Hi everyone x happy Easter! Wondering wot ur thoughts are on something' I have a 16 yr old daughter who for the last year or more is

Constantly tired. She could sleep the clock round. I had her at the docs last year before I was diagnosed thinking it was her blood/iron but they all came back ok. I can rem being like that myself at that age x right through until I was diagnosed last year at age 40. I know Pbc is heridatory but that it usually hits us at +30 but does anyone else find they suffered the fatigue side of it at an early age? If it wasn't for me getting the itch over a year ago I think my gp would still be fobbing me off about the fatigue! Xx

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I got diagnosed a year ago (I am 34).. I remember feeling the tiredness as far back as ten years.. But I've raynauds and mixed connective tissue disease too (only diagnosed this year) so it could have been from that... All kids that age could sleep all day (they're night owls quite often I know I was) x

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Hi, I've been diagnosed with PBC for 6 years, I'm 36 now, but have had fatigue since I was about 14. I was diagnosed with ME when I was 16 so have always struggled with this. Autoimmune disease and ME run in my family and my consultant thinks I may have had PBC since I was a teenager. It'd be worth her being tested, I struggled so much as a teenager as no one knew what was wrong with me and I felt dreadful all the time. Luckily my parents kept fighting and took me to every dr they could find to try and help me, but it ended up just having to manage my life and make adjustments. (I couldn't do sports anymore and had a lot of time off school sick as I just couldn't manage as I was so tired) I also had (have) some great friends who really supported me. Good luck, hopefully she just has normal teenage tiredness! xxx


I would be concerned about getting her tested at such a young age. If they do diagnose PBC then she may have difficulty getting a mortgage, life insurance, travel insurance etc. As a teacher for 30 years I know that most teenagers could spend their lives sleeping - it's all part of the growing process. If I were you I would just let her be and when she grows up if she is still constantly fatigued then she can make that decision for herself.


You'll probably not like my answer Dmb1 but personally I'd leave it be. Could just be the angst of a teenager. My own daughter used to faint at school on a regular basis when she was at secondary school. I kept being told to take her to the GP which I did. Nothing showed any signs of anything being wrong. My explanation as the GP agreed was that I had a teenage girl of not far off 6 feet tall going to school every morning without any breakfast so her sugars would prob be a problem and that was why she was passing out. The problem persisted into young adulthood and in her job she was taken to A&E and then ended up with an MRI scan and also an EEG think it is called (wires on your head). All were normal. She then sort of got over it all and no problems since.

PBC is said that it can be hereditary but I'd not want to start the ball rolling as even so it might never happen. It would be 'out there' too. At the end of the day as I see it, had I known about PBC long before I started being symptomatic then I would have just had the repeat bloods, etc to check but at the same time I think I might have lived my life slightly differently and also at the end of the day as I see it at present there is nothing can be done to stop it occurring. I am still of that way of thinking, what you never know.....

My own sister had a brain haemorrhage November last year and she is still recovering. Our late mother suffered one that killed her within hours. I was informed that it can be a hereditary thing and if you have 2 first line relatives who have suffered from one of these aneurysms then you can be tested. I have no desire to do so, I just do not want to know.


I agree with Peridot, having a label such as PBC has all kinds of implications for the future of a 16 year old, insurance etc.


I actually never thought of all the implications of being labelled with something like Pbc at a young age. I have often wondered is it jus her age x she doesn't eat a breakfast before leaving for school in the morning. Maybe need to address that first of all. Thanks everyone x


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