(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)67Gastrointestinal Issues (constipation)80
Bone/Joint Disorders (flat feet)75Vision/Eye Disorders (strabismus)67
Learning/Developmental Disability (nonverbal)30Endocrine Disorders (heat sensitivity)100
Mental Health/Behavioral Issues (mood swings)55Cardiology Disorders (cold/clammy hands)72
Sleep Disorders82Respiratory Disorders (aspiration pneumonia)74
Hypotonia85

Ho NT, Kroner B, Grinspan Z, Fureman B, Farrell K, Zhang J, Buelow J, Hesdorffer DC; Rare Epilepsy Network Steering Committee.. Comorbidities of Rare Epilepsies: Results from the Rare Epilepsy Network. J Pediatr. 2018 Sep 5. pii: S0022-3476(18)30960-0. doi: 10.1016/j.jpeds.2018.07.055. [Epub ahead of print] PubMed PMID: 30195559