Unmet Needs as Described by People with Epilepsy
Earlier this year, board members of the Epilepsy Therapy Project shared their perspectives on the unmet medical needs for people with epilepsy. These experts and many others help scientists see where new research and development is needed. However, since people with epilepsy and their families may view needs differently, we asked members of epilepsy.com’s Community Forum to share their perspectives of both the unmet medical and social needs of epilepsy.
The need for increased awareness and public education about epilepsy was frequently cited as a need affecting the social and medical aspects of living with epilepsy. In particular, members frequently cited the need for people to know how to appropriately respond to a person during a seizure and how to prevent stigmatizing attitudes and behaviors. The cost of medications and medical care, as well as problems accessing medical care and social support services were highlighted as critical issues needing attention. Concerns regarding the unmet social needs of epilepsy ranged from how epilepsy can affect relationships, transportation, work, and school and highlights how these problems can often be worse and more difficult to treat or resolve than a seizure.
Please visit this community forum thread to read more, and add your own thoughts!