A new diagnosis often brings uncertainty and many questions.
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.
I'm a paragraph. Click here to add your own text and edit me. It's easy.
2
LEARN ABOUT DESSH SYNDROME
I'm a paragraph. Click here to add your own text and edit me. It's easy.
3
CONNECT WITH DESSH COMMUNITY
I'm a paragraph. Click here to add your own text and edit me. It's easy.
4
CONTRIBUTE TO RESEARCH
I'm a paragraph. Click here to add your own text and edit me. It's easy.
5
CONNECT WITH DESSH COMMUNITY
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'.
Are you feeling overwhelmed due to the diagnosis or lack of available care?
This feeling is very real and common for people dealing with DESSH. Whether it be having questions with no answers, coping with stressful medical or behavioral issues, long phone calls to insurance, or lack of help, combined issues can easily lead to the feeling of being overwhelmed. We encourage you to speak out and not feel ashamed to ask for help. Please find some links below on rare disease blogs, books, and podcasts.
Are you feeling frustrated due to lack of or mixed information?
Compared to other diseases, relatively little is known about DESSH. Because the syndrome was discovered so recently (in 2015), geneticists and doctors are still facing a lack of knowledge. Researchers are working hard to find answers, but research takes time. The DESSH Foundation has a PDF available that may help you understand the disease. Additionally, we are armed with the resource of the combined experience of the DESSH community. We encourage you to reach out to other DESSH families.