Difficult to Control Seizures: Most patients with CDD have daily seizures. Seizures typically begin by age 3 months and are extremely difficult to control.
Intellectual Disability: Nearly all patients with CDD have developmental delays and eventually intellectual disability.
Currently there is no cure for CDD. Patients are treated for their symptoms, not for the underlying cause of the disease. Seizure control is the primary goal for patients with CDD. There are currently companies investigating treatments for CDD including possible gene therapies.
The average person with a rare disease sees 7.3 specialists over a span of 5-7 years before receiving an accurate diagnosis. AmbitCare Ambassadors provide free services including listening to understand your challenges, guiding you on potential next steps, and recommending resources.