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Medical Care transitioning


        For parents, caregivers, health care providers, and teachers, concerns and questions often arise regarding the care and well-being of individuals with Cornelia de Lange Syndrome. 

The medical section of transition goes over medical transition, puberty and sexuality. It gives parents and caregivers a better understanding of what to expect during the adolescent years and how to better manage the different stages of a growing child.

Healthcare Transition Planning is the purposeful, planned movement of young adults from a child-centered to an
adult-oriented healthcare system (Antosh et. al., 20 l3).


 

Recommendation(s)

Medical Care transitioning

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Individuals with CdLS and their families need life-long care provided by healthcare providers and social services, who should educate themselves about CdLS.
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Syndrome-specific and personalised care plans through shared decision-making should be offered to every individual with CdLS and their caregivers.


                                                                                                                                                                                                                                                                                                                           

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