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!
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