Hello! Just stumbled across this and couldn... - PBC Foundation

PBC Foundation

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Hello! Just stumbled across this and couldn't be happier!

TaylorC1991 profile image
4 Replies

Hi! My name is Taylor and I am 23 years old. I was diagnosed with PBC at 19 but they think it all started at 14. I had my gall bladder removed as precaution but it didn't help so after a few years of testing and such they came to the conclusion it was PBC. I've noticed its mostly people in their 40s and so on, but is there anyone else my age with this? Anyone pregnant have it? I have one daughter who is 1 almost 2 and I'm pregnant with a second daughter with only ten weeks left. (Proud Momma here :) ) It seems pregnancy is a bit more rough on my body with this disease. After I had my first daughter I turned kind of yellow but it thankfully didn't last long. I'm somewhat concerned for this go around. I also know another woman personally who has PBC and her urso stopped working. Has anyone else encountered that? Nice to know this place exists! I for sure thought I was alone and it's definitely been tough doing it alone and not having anyone in my corner understand. I always say though don't let your hard times become you. Thanks in advance! Hope to make some new friends!

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TaylorC1991
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4 Replies
Batatis profile image
Batatis

Hi Taylor, happy to read your post and to write back to you!

I am almost 60, and I am an Egyptian but of Cocasion origin. I am a mother of two gentlemen,one in his early thirties and the other us in his mid twenties.

Your post reminded me of myself when I was pregnant, and also of my mother when she turned yellow after giving birth to my kid brother and her fourth child.

PBC is not known by doctors in our part of the world as it is very rare. Also because it is a newly discovered disease.

My mom who is now 84 was never diagnosed even though she suffered the itching most of her young life, and only recently she started the fatigue and stiffness while walking, for she has always been an energetic mother and working mom.

As for me, I have been living my young life thinking I was either wrong in the mind or in the body. Simply because I would be full of energy then suddenly I am helpless. It was only in 2010 when I started all sorts of investigations after a mammogram test had showed mild enlargement in my arm pits glands. In 2011 I was officially diagnosed with PBC.

It was a pleasure responding to your post, and I hope that my story will give you the support you need!

TaylorC1991 profile image
TaylorC1991 in reply to Batatis

Thanks for replying! I completely understand about having energy one day and exhausted the next, it does take a toll. I must say 84! Wow! Its good to know she's made it so far with this condition!

Junolee profile image
Junolee

Hi Taylor, welcome. Hi Batatis too, I am fascinated to read your reply. I was diagnosed in June 2012 after being hospitalised with jaundice and anaemia for3 weeks. Being monitored very well and my liver functioning tests have returned to normal following a course of steroids (for 18 months, continuing Urso & imuran) however I am also being treated for osteoporosis and my iron levels are now a problem again. However, I feel very well and it hasn't stopped me working and travelling etc. Enjoying life. What interested me about your post is your Young age and your feeling that you have had PBC since 14. interestingly I was referred to a liver specialist at age 10 (having had tests for generally feeling unwell) my parents were told it was nothing to worry about just a slight anomaly. I had no other problems until I ended up in hospital over 2 years ago. i am 46 now.

gizocsi profile image
gizocsi

Please, enjoy Your pregnancy if it's possible, I think it was the happier period of my life! I suppose, there will be enough medical attention to Your condition with liver, and so nothing can stop You to be a happy mom of two nice girls. I think Batatis answer is so great, as her mom's life gives hope possibly not only to You.

Be well! Warm greetings :)

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