Self-Advocate Resources
Resources for PCDH19 Self-Advocates
We believe in supporting and empowering individuals living with PCDH19 to understand their diagnosis, advocate for their needs, and feel confident in who they are. Whether you’re a teen, young adult, or adult self-advocate, you are an important part of this community, and your voice helps shape the future of awareness, inclusion, and research.
Understanding Your Diagnosis
PCDH19 Epilepsy is a disease with a wide spectrum of severity in seizures, cognitive delays and other symptoms, which are all caused by a mutation of the PCDH19 gene on the x chromosome.
Learn More About PCDH19
PCDH19 Genetics 1: Understanding Genes & Chromosomes
Learn more about the genes and chromosomes related to PCDH19. This is the first in an ongoing series of instructional...
PCDH19 Genetics 2: Inheritance
Learn more about the inheritance of genes related to PCDH19. This is the second in an ongoing series of instructional...
PCDH19 Genetics 3: X-Chromosome Inactivation & Mosaicism
Learn more about the X-chromosome inactivation and Mosaicism related to PCDH19. This is the third in an ongoing series of...
Stories From the PCDH19 Community
Read stories from self-advocates who share their personal journeys, challenges, and triumphs. You can also submit your story to share with our community.
A hike from the heart – PCDH19 Life
This summer, my husband and I took our kids on a road trip through Utah and Colorado. We drove through...
Transitioning to Adulthood With PCDH19 Epilepsy
When your child has significant health & support needs, every approaching transition can feel daunting, but the transition to adulthood...
My Perspective: Growing Up With PCDH19 Epilepsy
Many people think that having a seizure disorder like PCDH19 merely means that you occasionally have seizures. However, the reality...