- Saethre-Chotzen syndrome
- Interviews
Amanda's interview
How did all start?
By generics
Do you already have a diagnosis? How long did it take you to get it?
Yes i was diagnosed as soon as i was born.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Eyes, ears and thoart. Speech therapy. My head. All worked for me at the royal childrens hospital.
What has been the most useful thing for you so far?
Braces for my teeth and filled in forehead.
What have been your biggest difficulties?
Being bullied for the way i look. Everyone starring and saying comments. Not getting a job because of my looks.
How has your social and family environment reacted? Have your social or family relationships changed?
Family no, social yes
What things have you stopped doing?
Going out, exercising, making new friends, taking photos, loving myself
What do you think about the future?
I dont want to, it scares me
So far, which years have been the best years in your life? What have you done during them?
Lastest. Landed a job and a boyfriend, got a kitten and trying
What would you like to do if you didn’t have your condition?
Be a model or face of a company, go out alot with friends, have boys chase me to be their girlfriend. Go to top places with famous people. Just things that pretty girls do.
If you had to describe your life in a sentence, what would it be?
Melbourne weather
Finally, what advice would you give to a person in a similar situation?
Love yourself no matter what, keep strong and dont fail like I have
