mimi's interview
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How did all start?
It was passed on from my grandpa
Do you already have a diagnosis? How long did it take you to get it?
Yes From birth I
For what medical specialties have you been treated? What has been the most useful specialty for your?
We have been to a bone specialist, but no results
What has been the most useful thing for you so far?
Just avoid being in cold water and avoid being out in cold weather
What have been your biggest difficulties?
Writing when I was in school Being dressed up warmer than everyone else, was so embarrassing
How has your social and family environment reacted? Have your social or family relationships changed?
Some don't understand Those who know, are sympathetic to us
What things have you stopped doing?
Athletics Swimming Going to other countries Etc
What do you think about the future?
I have grown to accept this condition
So far, which years have been the best years in your life? What have you done during them?
Having a family that support and assist me. Having a wonderful husband and kids that are understanding, and motivating.
What would you like to do if you didn’t have your condition?
Went skiing Surfing Sky diving Swimming Visit other countries when ever I can Eat ice cream whenever, etc
If you had to describe your life in a sentence, what would it be?
I am happy to be alive living my life happy
Finally, what advice would you give to a person in a similar situation?
Just keep yourself warm, avoid too much of cold water and cold weathers. It's not something that is life threatening, just know how to manage your life.
