Help us to help more people
  2. Sturge Weber Syndrome
  3. Advice
Contact with other parents
by Lynn Buchanan
My mum dad and brother who love me
by Lucy
The support of my family and friends
by Adam Lefevre
My family's Positive attitude
by Vinayak Narayanaswamy
Communication true eye gaze saved my life.
by
Family
by Paulo Leandro Machado Viana
Eu amo ele mais que tudo nesse mundo
by Vitor Mateus pires dos reis
When my brother with Sturge Weber Syndrome have friends who he can trust for real.
by Emilia Fichtelius
APAP/CPAP Therapy for moderately severe Sleep Apnea. ❤
by Cynthia Murphy- Craniofacial Awareness Advocate
Tegretol has been very helpful and Phenobarbitone once the seizure degenerate to status epilepticus.
by Adedeji
Having a mother who understood and helped me when others do not
by Murray
Having good supportive family
by Haley
Epilpsie
by Florence
Medication
by Annette
My mother always ensured me I was as good as anybody else
by Lena Hasselgren
I make sure I get plenty of rest
by Rebecka
Lankomes pas gydytojus
by Aliona
Our son can’t speak but we do all we can to make him feel better
by Noah Amorebieta
Online communities
by Lynn Buchanan
Great Drs and PMH who look after me.
by Lucy
Good doctors who take care of me.
by Adam Lefevre
My courage and spirit
by Vinayak Narayanaswamy
My medice
by
The professionals who take care of my son
by Paulo Leandro Machado Viana
Menino muito feliz
by Vitor Mateus pires dos reis
When my brother with Sturge Weber Syndrome got able to get his own dog.
by Emilia Fichtelius
Meeting others within the craniofacial community who I can relate to in more ways than one. ❤
by Cynthia Murphy- Craniofacial Awareness Advocate
Ibuprofen reduces acute headache sometimes.
by Adedeji
My late friend and mentor, naturalist and author R. D. Lawrence
by Murray
Having amazing doctors
by Haley
Hemispherotomie
by Florence
Love from family and friends
by Annette
My family is very supportive and helps me now that some of my symtoms make life more difficult as I´m growing older
by Lena Hasselgren
I work closely with my medical team to stay on top of my changing condition.
by Rebecka
Turim dideli palaikyma seimos
by Aliona
Music helps him
by Noah Amorebieta
And great family and friends who love and support me.
by Lucy
Having a positive outlook
by Adam Lefevre
My wonderful doctors
by Vinayak Narayanaswamy
The love and laugther I get from al my familiy
by
Group on facebook
by Paulo Leandro Machado Viana
As medicações deixam ele sonolento
by Vitor Mateus pires dos reis
When my brother with Sturge Weber Syndrome is confident and dare to speak about both his syndrome and his strong sides.
by Emilia Fichtelius
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
We hired a someone to assist in learning
by Adedeji
Photographing wild animals and writing poetry to reduce stress
by Murray
Meeting people with the same syndrome
by Haley
Handicap severe
by Florence
Support through the Sturge-Weber community
by Annette
Singing in a choir
by Lena Hasselgren