what this blog is going to be about:

~ my life
~ my experience with Alagille Syndrome
~ medical info, education and awareness
~ my ramblings and rants
~ sarcasm

and whatever my current mood dictates :)

my very brief medical history:

I was born with a very rare genetic condition called Alagille Syndrome (AGS). AGS affects 1 in every 100,000 live births.

I was diagnosed with Alagille Syndrome (AGS) when I was three months old. I was not growing or gaining weight, so my doctor ordered some labs and then referred me to a Gastroenterologist (GI). The GI doctor ordered a surgical liver biopsy and was then able to diagnose me. A few days after the biopsy I went into shock and was rushed back to the hospital. The doctors prepared my parents for my death that night, but God gave me the strength to survive.

AGS mostly affects my liver and bile - I have less bile ducts than the average person and not enough bile gets out of my body, this causes me to itch, A LOT. I also have a butterflied vertebrae and mild scoliosis, a heart murmur, Peripheral Pulmonary Stenosis (PPS), posterior embryotoxon (a thin line seen at the edge of the iris, it does not affect vision in any way), Axenfeld's anomaly (a developmental eye abnormality consisting of posterior embryotoxon and iris processes to Schwalbe's ring), and growth and nutrition issues. I was also born with Chiari I Malformation, this means the back of my brain presses on my spinal cord. I also have hemangiomas, clusters of blood vessels on my spine. This is a new growth in the last few years. I was diagnosed with Hypothyroidism (under active thyroid) in July 2008.

On November 14th, 2012 I had a liver transplant!


to get more of a history please visit: http://www.caringbridge.org/visit/kelly1