All posts on this blog that inlcude information about my medical care/treatment of Ornithine Transcarbamylase Deficiency (OTC) are for personal documentation and in now way are to be taken as "medical advice".

All management plans are customized to each patient's needs/disorder and my information is exclusive to my specific needs and are overseen carefully by my team at Strong Memorial Hospital in Rochester, NY.

If you have any questions about anything you read here, in regards to UCD's, please feel free to take what you have read directly to your own team.

Remember, I am just a patient, not a doctor. I would LOVE to talk to anyone about "everyday living" with Urea Cycle Disorders and would be happy to answer any questions...anytime at all.


Amy & J.J.

Amy & J.J.
Happiness is possible even while living with a UCD


Tuesday, April 20, 2010


Well, I am really bad at introducing myself but here it goes...my name is Amy and I am an adult patient with a urea cycle disorder known as OTC (ornithine transcarbamylase deficiency).

Some of you may know me from the National Urea Cycle Disorder Foundation conferences. I was the adult patient that spoke at the conference in 2008 (?).

I am writing this blog in hopes of connecting with other adult UCD patients and their families. I say families because as my spouse, J.J., can tell you it is not always easy living with a UCD patient.

I will be posting a photo of myself and my family members (that would be the hubby, 2 cats and 1 dog) later.

I work full-time outside of the home and my side project is taking photos of my hubby's band, Bone Yard, and selling the band merchandise (t-shirts, shot glasses, etc.) when they play out.

My story of my diagnosis is a long one so I will save that for a separate post.

Wishing good health to all my fellow UCD patients!

1 comment:

  1. I get to be your first comment! Excellent!

    Happy to see another UCD blog on the web...it is a wonderful way to share our stories and connect with each other!

    Looking forward to reading your story when you get it posted!