I had my morcellation craniectomy at Wexler @ Ohio State in 1979.
I've had this condition my whole life been healthy and haven't had any surgeries.
Friends and family always there for support
Its nice to see other people with crouzons. Its like seeing members of my family. We look alike. Even though we live in vastly different places.
Animal's do not judge.
Knowing that other people have it.
Reading
The Family
John Radcliffe hospital
APAP/CPAP Therapy for moderately severe Sleep Apnea. ❤
Soutien moral
I have not any Crouzon-related surgeries since then; no facial reconstruction, etc. I visibly have Crouzon Syndrome but I'm comfortable with my appearance and have a fairly normal, happy life.
My family and close friends show support and love. They are always there to remind me that I'm no different then an average person.
I live a healthy life
I have kept childhood friends all my life and I am 57
Being able to talk to people now about it.
writing
My surgeon in Bogota
My mum who's got the same as me
Meeting others within the craniofacial community who I can relate to in more ways than one. ❤
Les parents /La famille
I take extended-release inderal/propranolol to help with my migraines (which I suspect are Crouzon-related), and am considering a hearing aid in my left ear to treat the hearing loss.
Even when I have those days I feel self conscious I remember what I love to do and that's to bring happiness and laughter to people I meet.
i learn everything about Craniofacial syndrome
I can go into someone else's life and feel pretty if I read.
Being connected to other people who have it,and hopefully help people by providing information they might not know about.
Believe in god and think that everithing will be fine
My son makes me smile every day
Advocating for the cause of craniofacial differences and involving EVERYONE in these efforts. We must raise awareness and enact change TOGETHER! ❤
Éducation