Help us to help more people
  2. Crouzon syndrome
  3. Advice
I had my morcellation craniectomy at Wexler @ Ohio State in 1979.
by Tom Head
I've had this condition my whole life been healthy and haven't had any surgeries.
by Evelyn Carrillo
Friends and family always there for support
by Torey
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.
by Kylie
Animal's do not judge.
by Enid
Knowing that other people have it.
by Sharon Snipe
Reading
by Khadidja
Music
by Andrew Neal
The Family
by Byron Felipe
John Radcliffe hospital
by Marie
APAP/CPAP Therapy for moderately severe Sleep Apnea. ❤
by Cynthia Murphy- Craniofacial Awareness Advocate
Soutien moral
by Riffi
Skull surgery (CVR/FOA)
by Brynly Allison
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.
by Tom Head
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.
by Evelyn Carrillo
I live a healthy life
by Torey
I have kept childhood friends all my life and I am 57
by Enid
Being able to talk to people now about it.
by Sharon Snipe
writing
by Khadidja
Music
by Andrew Neal
My surgeon in Bogota
by Byron Felipe
My mum who's got the same as me
by Marie
Meeting others within the craniofacial community who I can relate to in more ways than one. ❤
by Cynthia Murphy- Craniofacial Awareness Advocate
Les parents /La famille
by Riffi
My Craniofacial Team
by Brynly Allison
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.
by Tom Head
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.
by Evelyn Carrillo
i learn everything about Craniofacial syndrome
by Torey
I can go into someone else's life and feel pretty if I read.
by Enid
Being connected to other people who have it,and hopefully help people by providing information they might not know about.
by Sharon Snipe
cook
by Khadidja
Music
by Andrew Neal
Believe in god and think that everithing will be fine
by Byron Felipe
My son makes me smile every day
by Marie
Advocating for the cause of craniofacial differences and involving EVERYONE in these efforts. We must raise awareness and enact change TOGETHER! ❤
by Cynthia Murphy- Craniofacial Awareness Advocate
Éducation
by Riffi
OT/PT/ST
by Brynly Allison