Saturday June 23rd is Dravet syndrome awareness day!
Dravet syndrome is a rare genetic dysfunction of the brain (epileptic encephalopathy). It begins in the first year of life in an otherwise healthy infant, and it is lifelong.
Common issues associated with Dravet syndrome include:
Prolonged and frequent seizures
Behavioral and developmental delays
Delayed language and speech issues
Growth and nutrition issues
Disruptions of the autonomic nervous system (which regulates things such as body temperature and sweating)
So here are a few helpful tips and resources, courtesy of the Dravet Syndrome Foundation (DSF)!
Join a support group
The DSF Family Network is a program that gets patients and families together to share local updates regarding doctors and therapy options, information on local events and fundraisers, and resources that are available in your state and region.
2. Participate in a fundraiser
DSF offers several established fundraising programs throughout the year – or you can set up a personal fundraising campaign with your own fundraising page that will feature your story and why you support the work of DSF.
3. Be active on social media
It’s a 21st century world! Whether you use your own social media to raise awareness, or connect others in the Dravet community to these pages, social media is such an important communal hub.
4. Dravet Syndrome Foundation’s 2018 DSF Conference
This three day conference brings together caregivers, medical professionals, and families to network and learn more about research, treatments, and day-to-day disease management.