(Ho et al. 2018) The Rare Epilepsy Network (REN), a collaboration among more than 30 rare epilepsy patient groups including the Dravet Syndrome Foundation, released the first summary of data collected through their web-based, patient-reported database. 795 patients and caregivers participated, 106 of which were identified as Dravet syndrome, representing the 3rd largest group of participants behind those with Tuberous Sclerosis and Lennox-Gastaut syndrome. All patients with Dravet syndrome were classified as complex-chronic disease (C-CD), compared to 80% of those with Doose syndrome. The overall conclusion was that most rare epilepsies carry a significant load of co-morbidities and are medically complex. The Dravet-specific data is of a bit more interest:
| Comorbidity Area (specific issue) | DS Patients
Reporting (%) |
Comorbidity Area (specific issue) | DS Patients
Reporting (%) |
|---|---|---|---|
| Oral/Dental Issues (bruxism) | 67 | Gastrointestinal Issues (constipation) | 80 |
| Bone/Joint Disorders (flat feet) | 75 | Vision/Eye Disorders (strabismus) | 67 |
| Learning/Developmental Disability (nonverbal) | 30 | Endocrine Disorders (heat sensitivity) | 100 |
| Mental Health/Behavioral Issues (mood swings) | 55 | Cardiology Disorders (cold/clammy hands) | 72 |
| Sleep Disorders | 82 | Respiratory Disorders (aspiration pneumonia) | 74 |
| Hypotonia | 85 |
