enrah
European Network for Research on Alternating Hemiplegia
÷
»
Clinical Presentation and Diagnosis
Molecular Genetics Testing
Prevalence of AHC
Living with AHC
÷
ATP1A3 gene discovery
New research
÷
Conferences
Archive
÷
Mission
Projects
Collaborations
÷
Alternating Hemiplegia of Childhood (AHC) » Living with AHC
  • Wach the personal story of a father of an AHC girl in Iceland http://humantimebombs.com. 
  • Support organisations  for people and families affected by  Alternating Hemiplegia of Childhood:
Worldwide

Connect to the AHC Community  through  RARE CONNECT  
  •  Orphanet Disability Project. Read  the description of disabilities related to Alternating Hemiplegia of Childhood.
  • Caregiver's burden and psychosocial issues in alternating hemiplegia of childhood : parental perceptions of AHC were investigated  among 30 French families with  an AHC affected family member The study showed that the disease has a significant impact on families and that  parental concerns change over the time:  whereas at time of diagnosis the concern of the parents were  focused on the hemiplegic spells and abnormal eye movements, at the later stage, parents ranked the cognitive consequences of the disease and the  low level of autonomy as the highest burden of AHC. 
2009 © LabelArt WebDesign