2. Alagille Syndrome
3. Interviews

Michael's interview

How did all start?

Born with but never diagnosed until my daughter was born in 1987 and found out she had it

Do you already have a diagnosis? How long did it take you to get it?

1987 Dr Fitzgerald at Riley’s in Indianapolis walked in to the room to examine my, totally yellow, 1 month old daughter. As soon as he walked in and set eyes on us both said I know what she has. It is Alagilles Syndrome and she got it from you cause you have it also. I didn’t get an official diagnosis for me until 2006 when had my primary Dr do genetic test which confirmed it. Mutation on both Jag1 and Notch 2. Not sure how common this is.

For what medical specialties have you been treated? What has been the most useful specialty for your?

I have never really been “treated” for the Alagille, but sure have been for all the complications that are results of having. The broken bones, the renal failure the eye problems the seemingly endless infections the breathing issues. Never really thought about it until my daughter died in the ER in 2014 on Fathers Day. She was taken in because throwing up blood while trying to get handle on that she had a massive heart attack and died.