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.

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 (www.nucdf.org). There is a lot of information there about OTC that may be helpful to you.

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?

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.

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.