I am writing this blog to show patients and families of adult patients with urea cycle disorders that life can be fun even when coping with a UCD on a daily basis.
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.
Happiness is possible even while living with a UCD
Why can't the metabolic specialists that I deal with reagrding my OTC remember that I am an adult and as of Memorial Day weekend 2010 will have been diagnosed for 25 years and as a result I am familiar with this disorder and sometimes I know what is best for me....FRUSTRATING!!!!