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Which advice would you give to someone who has just been diagnosed with Alagille Syndrome?

Advice for the newly diagnosed with Alagille Syndrome, written by people who have lived it. What they wish they had known on day one.

Alagille Syndrome advice
2 answers
Seeking out for answers and question online in support groups the best way you can get information for just being diagnosed. When i was younger there wasnt the online support group that there is now. And im almost 18 and i still to this date seek out information because with out a doubt someone has at least experienced or is experiencing what you are going through. And the good thing is you could be helping someone else if they ask a question. I really recommend it. And you can look through all the questions asked its perfect.
Posted Feb 23, 2017 by Jordan 1000
Don't give up !
You must fight in your life !
Posted May 10, 2017 by Blazhe Arsov 1050

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Stories of Alagille Syndrome

ALAGILLE SYNDROME STORIES
Alagille Syndrome stories
BELLAS ALAGILLE SYNDROME
My daughter Isabella was diagnosed with alagille syndrome two years ago. She is six years old and I'm the first grade at school. She has had problems associated with alagille since birth. Her itching has been severe since she was a few days old. It h...
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DEVOTED MOM
My son suffers from ALGS.  He was diagnosed at 3-yrs of age by an excellent cardiologist at Seattle Children's.   Although he does not have the liver complications, there are numerous other systems that we continue to find are affected as he grows:...
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HAVING FAITH
My name is Shambhavi Ravishankar and I'm from Bangalore, India. I live in New Delhi. I am 24 years old. Neither of my parents (or anyone in the family that we know of) have ALGS and I have a younger brother who also doesn't have ALGS. I've moved arou...
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ANDREW'S LIVER STORY
Our son was born September 2013. It was almost a year before we had a true diagnosis of alagille syndrome. His only effects his liver. He is on the transplant list and awaiting a phone call.

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