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i was looking to talk to other people that are familiar with this disease. My son is 3 1/2 and got diagnosed in july of this yr with it. i know alot about it but i always want to know more stuff.
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Does anyone have Mitochondrial Disease?
- By lildevil2956
- Posted September 27, 2009 at 10:45 pm · 5 replies
- In My disease has no treatment
- Shared with the public
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- By NORDGeneticCounselor
- Posted September 28, 2009 at 9:15 am
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Another good resource for connecting with others is The United Mitochondrial Disease Foundation. They have a networking program called "Mitoconnect" that may be of interest:
http://www.umdf.org/site/c.dnJEKLNqFoG/b.3253155/k.286F/Patients_Families__ General_Public.htm
- By sarahmcintyre
- Posted September 29, 2009 at 2:56 pm
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My son was diagnosed at age 3 with a mitochondrial disorder. What has your son been diagnosed with?
- By lildevil2956
- Posted September 29, 2009 at 4:36 pm
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mitochondrial disease also... and he is 3 now wow thats awesome i found someone too with the same diagnosis :) can you email me with your email addy so we can talk about your sons please. mine is lildevil2956@yahoo.com also where are you from? in from louisiana :)
- By sarahmcintyre
- Posted September 30, 2009 at 11:40 am
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my email is: sarahmci@co.clackamas.or.us (during the day) and eves and weekends sarah.arciero@verizon.net.
My son was diagnosed at age 3.5 with Leigh's syndrome (complex 1 and 4). He was also born with a heart defect which was repaired at age 1. He is now 24 years old. He was not expected to live to see his 4th birthday.
- By sarahmcintyre
- Posted September 30, 2009 at 11:41 am
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oh, and I live in Oregon. In the rain (hahaha).
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