A Charcot-Marie-Tooth Disease interview .

[email protected]'s interview


How did all start?

I went to do my annual eye exam and they referred me to a specialist to do testing on my optic nerve and was also having trouble with my legs and back so they referred me to a neurologist in Houston.

Do you already have a diagnosis? How long did it take you to get it?

It took 2 years and a genetics test to get the diagnosis. I was given the results in January of 2015.

For what medical specialties have you been treated? What has been the most useful specialty for your?

I have been treated for CMT type 6 and nothing has worked so far with medication.

What has been the most useful thing for you so far?

The only useful things for me right now is my wheelchair and rollator

What have been your biggest difficulties?

Being able to get the help needed either with medication or state Services.

How has your social and family environment reacted? Have your social or family relationships changed?

My wife does a lot to help me with everything I can not do.

What things have you stopped doing?

Reading, going on long walks, working

What do you think about the future?

I haven't really thought about it

What would you like to do if you didn’t have your condition?

Go back to working, reading and long walks


Dec 9, 2019

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