Übersicht über alle häufig gestellten Fragen
Diese Fragen und Antworten wurden gesammelt für und von Menschen mit Cornelia-de-Lange-Syndrom (CdLS) und professionellen Experten rund um CdLS.
Auf diese Weise glauben wir, eine hilfreiche Ressource für Betroffene von CdLS bei ihrer Suche nach Antworten zu sein. Selten, aber gemeinsam stark!
Introduction
What medical care may a child with CdLS need?
What medical care may a child with CdLS need? > Paediatric Medical Care
What medical care may a child with CdLS need? > Growth in Childhood
What medical care may a child with CdLS need? > Feeding and Dental Difficulties
What medical care may a child with CdLS need? > Ability to move around and manipulate the environment
What medical care may a child with CdLS need? > Pain and Behaviour
What medical care may a child with CdLS need? > Puberty
What medical care may a child with CdLS need? > Adult medical Follow-up
What medical care may a child with CdLS need? > Adult medical Follow-up > Can individuals with CdLS have children?
What medical care may a child with CdLS need? > Adult medical Follow-up > Weight Management in Adulthood
What medical care may a child with CdLS need? > Adult medical Follow-up > How are the Organs Affected in Adults with CdLS?
What medical care may a child with CdLS need? > Adult medical Follow-up > Risk of Cancer in CdLS
Health difficulties in CdLS...
Health difficulties in CdLS... > Gastrointestinal Problems
Health difficulties in CdLS... > Gastrointestinal Problems > Malrotation; the intestines (or viscera) are twisted
Health difficulties in CdLS... > Gastrointestinal Problems > Constipation of the bowels (Obstipation)
Health difficulties in CdLS... > Gastrointestinal Problems > Reflux
Health difficulties in CdLS... > Senses
Health difficulties in CdLS... > Senses > The eyes and the visual system
Health difficulties in CdLS... > Senses > Ears and hearing
Health difficulties in CdLS... > Senses > Mouth, nose and throat
Health difficulties in CdLS... > The musculoskeletal system
Health difficulties in CdLS... > The musculoskeletal system > Upper limb abnormalities:
Health difficulties in CdLS... > The musculoskeletal system > Lower limb abnormalities
Health difficulties in CdLS... > The musculoskeletal system > Scoliosis
Health difficulties in CdLS... > Autonomic nervous system
Health difficulties in CdLS... > Sleep
Cognitive and behavioural characteristics in CdLS
Cognitive and behavioural characteristics in CdLS > Intellectual Disability
Cognitive and behavioural characteristics in CdLS > Executive Function
Cognitive and behavioural characteristics in CdLS > Sensory processing
Cognitive and behavioural characteristics in CdLS > Adaptive behaviour in CdLS
Cognitive and behavioural characteristics in CdLS > Self-injurious and aggressive behaviour
Cognitive and behavioural characteristics in CdLS > Repetitive behaviour
Cognitive and behavioural characteristics in CdLS > Social functioning including ASDs
Cognitive and behavioural characteristics in CdLS > Anxiety
Cognitive and behavioural characteristics in CdLS > Communication and language
Planung für eine bestmögliche Lebensqualität
Planung für eine bestmögliche Lebensqualität > Medical Care transitioning
Family Empowerment
Moleculair diagnostic criteria
Moleculair diagnostic criteria > Other genes
Moleculair diagnostic criteria > Mosaicism
Moleculair diagnostic criteria > Familial recurrence risk
Diagnostic approaches > diagnosis of CdLS prenatally (before birth)
