Story about Alagille Syndrome .

Devoted Mom

Dec 2, 2

By: Kerri


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:  inner ear deformaties, van druesen of the optic nerve, vascular abnormalities, etc etc etc.  I'd love to be able to share provider information - doctors in the area that others have found to embrace the disease and go "above and beyond" in treatment.

Know someone who should read this story? Share it

0 comments

Login or register to leave a comment


Alagille Syndrome jobs

Can people with Alagille Syndrome work? What kind of work can they per...

Alagille Syndrome diet

Alagille Syndrome diet. Is there a diet which improves the quality of ...

Alagille Syndrome life expectancy

What is the life expectancy of someone with Alagille Syndrome?

Alagille Syndrome advice

Which advice would you give to someone who has just been diagnosed wit...

Latest progress of Alagille Syndrome

What are the latest advances in Alagille Syndrome?

What is Alagille Syndrome

What is Alagille Syndrome

Is Alagille Syndrome contagious?

Is Alagille Syndrome contagious?

Celebrities with Alagille Syndrome

Celebrities with Alagille Syndrome