MNGIE Disease
Hi all, I'm new here...
I was diagnosed with MNGIE disease in December 2012, and was wondering if anyone else here has this condition. I know it's very rare.
I am on TPN for 14hrs a night because I cannot absorb nutrition like normal people. I am currently 4'10 and weigh 64 lbs, and am 20 years old. I also have SBD (small bowel diverticulitis) and depression.
I have had 4 small bowel resections and I have seen Dr. Hirano in New York City in hopes of treatment. However due to my diverticulitis I'm a high risk for anything.
Nowadays I'm just looking for support and help with coping, as I feel like I don't have any options.
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