A Loeys Dietz syndrome interview .

Tracia's interview


How did all start?

Always been hypermobile with various dislocation, heart mitrial prolapse at 40, dissection a&b in 2012

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

Diagnosed 2013

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

Over coming fear

What have been your biggest difficulties?

Passing it to my children

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

No

What things have you stopped doing?

Can't walk great distances or lift anything heavier than 2 kg

What do you think about the future?

Glad to be here

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

Having 4 kids, Walking, construction, running my own business

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

Live as before

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

Restricted

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

Live on day at a time


May 13, 2019

By: Tracia

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