I am a 20yo female living with a rare terminal mitochondrial disease that affects my digestive, nervous, musculatory, and immune systems. There is no known cure.

Hi there. I was diagnosed with Mitochondrial Neurogastrointestinal Encephalopathy (MNGIE) in December 2012. My symptoms started when I was 15 years old, and I have been misdiagnosed multiple times with things like PID, IBS, anorexia nervosa, and ovarian cysts. Everyone's experience is different; my symptoms so far include gastroparesis, dysmotility, extreme weight loss, malabsorption, hearing loss, muscle weakness, nausea, vomiting, diarrhea, neuropathy, "white matter", and ptosis.

MNGIE disease is a rare recessive genetic condition, with no known cure and only about 200 known cases worldwide. There is research being done as far as treatments go, however I am a high mortality risk due to my also having diverticulitis in my small intestine, so anything they do has a higher chance of killing me instead of making me better.

Here is a blog I keep to record what goes on in my daily life.

Here is a Facebook page I run for my blog.

EDIT: Here are the diagnostic test results.

EDIT: Here is a great reference article about MNGIE disease.

EDIT: Those of you asking if I can have children, or if I would, or anything of the like... Currently my health is not well enough to carry and nourish a baby. I am 4'10 and I only weigh 65 lbs. I have to have my nutrition infused into my veins through TPN, which is Total Parenteral Nutrition. If I were to get pregnant right now, I would more than likely die or have a miscarriage. So no, I would not want to have a baby right now.

EDIT: I want to thank everyone who has asked questions. This is a very rare condition and all I want to do is spread awareness and try to help others like me. Please share what you've learned and please feel free to get in touch with me on here, on my blog, or on my page. I am online a lot and I am more than willing to answer any more questions anyone may have!! Thank you so much, Reddit!