The information on this page is designed to answer some of the questions that you may have about your craniofacial condition. It has been written by members of the Ä¢¹½tvÊÓƵ Craniofacial Team, which include Doctors, Craniofacial Nurse Specialists and Psychologists.
Craniofacial conditions
- Sagittal Synostosis
- Coronal Synostosis
- Metopic Synostosis
- Lambdoid Synostosis
- Other related conditions
This page includes important information but may not answer all of your questions. If there is anything else that you would like to know, speak to your parent(s) or carer(s) who may be able to help. It can be helpful to write down your questions which you or your parent(s) or carer(s) can ask at your next hospital appointment.
Craniosynostosis and me
What is craniosynostosis?
When you are born the bones in your skull are not joined up together. This is so that your head can grow. Craniosynostosis is when one or more of these bones join together early. This changes how your head grows.
What does this mean for me?
You may or may not have had an operation when you were younger to change the shape of your head. If you did have an operation, you may be able to see the scar across the top of your head. Not every child with Craniosynostosis needs an operation but we still need to see how your head and your brain are growing.
Why do I need to see so many people?
Everyone has a different role to check how your head and brain are growing. This includes seeing the Craniofacial Consultant or Nurse to measure your head, the Ophthalmologist to check your eyes and a Psychologist to check your development.
What if I get bullied because my appearance?
If you have been bullied about your head shape or scar, you might have felt upset, embarrassed, or angry.
If you are being bullied, you should speak to a responsible adult. This may be a family member, school teacher, counsellor or social worker.
The important thing to remember is that bullying is not okay and there are things that can be done to stop it.
Psychology – here to help
Sometimes it may not always be easy to talk to an adult about how you are feeling…
This is ok but it is important that you know you can speak to someone else – this is where a Psychologist can help. Psychologists are trained to help people talk about their problems and any difficult emotions or experiences they may be having.
Our team of Psychologists can offer sessions to help you learn ways to stop or prevent bullying, manage your anxiety and help to build your confidence.
All information that you share with us is treated confidentially unless there are concerns that you or someone else is at risk.
If you think that Psychology could be helpful for you, speak to your parent(s) or carer(s) who can contact us on:
Where can I find support?
Changing Faces
Changing Faces is a UK charity for everyone with a scar, mark or condition on their face or body that makes them look different. Their website is great and has lots of information on how you can build confidence and more.
Headlines
Headlines are a charity that support people with craniosynostosis.
Visit their website to see the things that they offer, including a member magazine, a confidential helpline, and invitations to local days out for all ages.
Hannah’s Fund
Hannah’s Fund is a charity that offers free psychological therapy by highly trained and qualified psychologists across the UK to individuals with craniosynostosis and/or facial disfigurement.
To apply for this fund and to find out more about why the fund was created, visit their website and complete the application form.
YoungMinds
YoungMinds is the UK’s leading charity for children and young people’s mental health. Visit their website to find out about the support that they can offer.
Useful Apps
Chill Panda
This App will teach you to relax, manage your worries and improve your wellbeing, using breathing techniques and light exercises to take your mind off your worries.
Cove
This App allows you to create music to reflect your emotions and store them in a personal journal or send them to someone and let your music talk for you.
Catch It
This App helps you to look at your problems in a different way to improve your mental wellbeing.
eQuoo
An evidence-based and captivating choose-your-own adventure game that increases your emotional fitness and teaches you new psychological skills, helping you to level up in real life.
Tellmi
A safe and secure forum for any teenagers to discuss any issue that affects them. You can also access anonymous advice from experts.