- Mitochondrial neurogastrointestinal encephalomyopathy (MNGIE)
- Interviews
Savelittlemichael's interview
How did all start?
Birth weight 4lbs 4oz. Projectile vomiting with every meal. Bloody acidic diarrhea. Nonconsoleable crying. Failure to thrive.
Do you already have a diagnosis? How long did it take you to get it?
4 years
For what medical specialties have you been treated? What has been the most useful specialty for your?
Gastroenterologist. Neurologist. Geneticist. Pediatrician. Opthamologist. Etc.
What has been the most useful thing for you so far?
Nutritional support
What have been your biggest difficulties?
Everything. Energy is just not here.
How has your social and family environment reacted? Have your social or family relationships changed?
Family has fought hard to stay strong.
What things have you stopped doing?
Some things I just can't do.
What do you think about the future?
I hope for it. I know life will be short.
So far, which years have been the best years in your life? What have you done during them?
None
What would you like to do if you didn’t have your condition?
Ride a bike. Play basketball. Eat regular food with My family.
If you had to describe your life in a sentence, what would it be?
Life is a struggle.
Finally, what advice would you give to a person in a similar situation?
Live everyday as it were your last.
