Frustration is understandable Hannah

[Guest guest]

I understand your frustration Hannah. It is not a well understood

field to begin with. Add to that a lack of physicians that take it

on and the difficulty of getting into one that does and the

frustration really builds. With all of those considerations, it

would be helpful if there was at least good communication and follow

through. We have learned everything we can about mito disorders and

try to balance Collin's care with normal life. We have been

fortunate to have a great pediatrician, and have seen Dr. Cohen whom

I have great respect for, but miscommunication still occurs and is

frustrating when it does. I feel alot of difficulty arises simply

from not enough medical providers in this field. I pray that changes

in the coming years. It would be great to see med students pursuing

this field of study. The best help we have had outside of Cleveland

Clinic has been the United Mitochondrial Disease Foundation's

website. The website is free, and has ask the mito doc if you are a

member. We joined at Dr. Cohen's recommendation and we are glad we

did. God Bless, take care. Joni