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personal experience

annemichelle21 Message
21 Dec 2008, 05:18 PM

I would like to start communicating with people have have OTC or have a family member with it. Our daughter (14 months) was just diagnosed and we don't know what to expect. We started a low protein diet this week. No one else in my family or my husband's family has the disorder. I would appreciate any advice or information you can share.
vwalterego Message
28 Jan 2009, 08:26 PM

Hi! My name is Amy. I am a 35 year old female with OTC. I was diagnosed at the age of 12 because I ended up in a coma after eating a roast beef sandwich. Also, if you have not discovered them already, please visit the website for the National Urea Cycle Disorders Foundation ( There is a lot of information there about OTC that may be helpful to you.
anusall Message
7 Apr 2009, 02:33 AM

If you read my post I just lost my twenty five year old fiance and I was wondering in your case Amy how fast and how the doctors were able to determine the diagnosis of the disorder when you had slipped into a coma. Did you have any symptoms any other time in your life that were more unoticable?
vwalterego Message
7 Apr 2009, 07:26 PM

I got lucky when I went into my coma because when I went into my coma I ended up being airlifted to Johns Hopkins. This is where Saul Brusilowe (one of the pioneers of OTC research worked). As a result after seeing my symptoms, my size and talking to my mother about my eating habits and my medical history I was diagnosed almost immediately. Before I was diagnosed I used to throw up when I ate a lot of protein and I also used to get what I thought were migraine headaches. These headaches stopped after I started treatment for OTC.
vwalterego Message
7 Apr 2009, 07:29 PM

Also, I just wanted to let everyone know that there has been a Facebook Group started for OTC Deficiency Awareness. Please start a Facebook page and join the group as this is a great way for parents & patients to learn from one another.