Recent discussion has emerged about the long-term outlook for adults with Dravet Syndrome. Understanding these discussions is crucial for families, caregivers, and healthcare providers planning long-term care.
Recent discussion
A recent study asked caregivers about changes they noticed in adults with Dravet Syndrome. Many reported seeing declines in thinking skills,
speech, social interaction, and movement. This raised questions about whether neurodegeneration, the gradual damage or loss of brain cells,
might occur in Dravet Syndrome.
Current medical consensus
The current understanding is that Dravet Syndrome is primarily a neurodevelopmental disorder that involves ongoing and increasing challenges over time. Symptoms and progression vary widely between individuals. While we know that adults do experience challenges including mobility problems, cognitive changes, and increased care needs, there is currently no direct evidence showing loss of brain cells in adults with Dravet Syndrome. Experts believe that these challenges may result from a combination of chronic epilepsy, long-term medication use, ongoing seizures, or the normal aging process.
Call to Action
To improve understanding of how Dravet Syndrome affects adults, more research is needed including:
- Adult involvement in long-term studies following individuals over time, such as the ongoing SCN1A Horizons Natural History Study
- Brain imaging studies
- Identifying biomarkers – measurable signs in the body that can give information about health or disease.
Further research is essential to provide accurate information to families and ensure adults with Dravet Syndrome receive optimal care and support.
For families and caregivers
These discussions may naturally raise concerns about the future. Families may find it helpful to talk with their medical team about theirindividual situation and what support options are available.