“A new diagnosis comes with a lot of unknowns and questions, but over time we learned we didn’t have to figure it all out alone.”
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The DESSH Foundation created this space to offer clear information and practical first steps for individuals and families at the beginning of the DESSH journey. Here, you will find guidance, resources, and direction to help you move forward with confidence.
Understanding the emotional impact of a DESSH diagnosis.
This feeling is very real—and very common—for people living with DESSH. Facing unanswered questions, managing medical or behavioral challenges, searching for resources, and dealing with limited support can easily combine to create a sense of overwhelm. Compared with many other conditions, relatively little is currently known about DESSH; doctors and researchers are still working to understand the function of the WAC gene, and research takes time. We encourage you to speak up and never feel ashamed to ask for help.
Peer Support
No parent should feel alone. Ever.
The DESSH Foundation has partnered with Parent to Parent to empower and support primary caregivers of people with special needs. You can receive one-to-one emotional support from a trained (non-DESSH) parent by clicking 'Find a Match'. If you would like to volunteer to assist others in a similar situation, instructions to become an ambassador can be found by clicking 'Training'.