Comorbidities of Rare Epilepsies: Results from the Rare Epilepsy Network

(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

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
By |2018-10-13T12:47:18+00:00October 13th, 2018|Categories: DSF Research Review|Tags: , |

About the Author:

Nicole is a former scientist and science educator who has an 11 year old son with Dravet syndrome and serves on the Board of Directors for the Dravet Syndrome Foundation. She reviews and summarizes research articles, making the content more accessible to those not involved in the scientific community.