- Poland Syndrome
- Interviews
Sharon's interview
How did all start?
Only noticed I was different in my teens
Do you already have a diagnosis? How long did it take you to get it?
Diagnosed during a work medical age 48yrs
For what medical specialties have you been treated? What has been the most useful specialty for your?
Physio is the only treatment I have ever been offered. It has made me able to manage my muscle pain myself now.
What has been the most useful thing for you so far?
Knowledge
What have been your biggest difficulties?
Self esteem and feeling ashamed
How has your social and family environment reacted? Have your social or family relationships changed?
My mum never noticed so it was only my husband that gave me confidence in myself.
What things have you stopped doing?
Hiding
What do you think about the future?
Worry that my condition is making things more difficult as I’m getting older so don’t want to retire to old that I can’t enjoy it.
So far, which years have been the best years in your life? What have you done during them?
The last 4yrs
What would you like to do if you didn’t have your condition?
Wear nicer underwear
If you had to describe your life in a sentence, what would it be?
Challenging with weekly battles with good and bad days of health
Finally, what advice would you give to a person in a similar situation?
Manage the bad days and live life to the full on the good days.
