A Ellis Van Creveld Syndrome interview .

lee's interview


How did all start?

it started at birth in 1964

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

yes

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

Heart condition, Polydactal digits hands and feet, Asthma, legs,back surgeries

What have been your biggest difficulties?

learning to walk three times

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

some

What things have you stopped doing?

riding horses

What do you think about the future?

unsure

So far, which years have been the best years in your life? What have you done during them?

my 20's and 30's Had my son and lived life like every moment counted

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

Go back to School and Finish

If you had to describe your life in a sentence, what would it be?

I hate my heart.

Finally, what advice would you give to a person in a similar situation?

Live like every day was your last, because with this we are not promised anything.


Feb 23, 2021

By: lee

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