Living Fully with CDKL5:The Role of Palliative Care

In this recorded IFCR Conference session, Tristen Dinkel, FNP-PC, MSPC, CNRN, CPN, explores the role of palliative care in supporting individuals with CDKL5 deficiency disorder (CDD) and their families. This compassionate discussion explains that palliative care is not limited to hospice or end-of-life care; it can provide an added layer of support at any age and at any stage of a serious illness, alongside other treatments. The session discusses how palliative care teams can help address symptom management, including seizures, pain, sleep, behavior, and gastrointestinal concerns, while focusing on comfort, meaningful experiences, and quality of life for both the individual and their family. Learn how palliative care can support family-centered goals, care coordination, emotional and psychosocial needs, respite and home-nursing resources, advance care planning, and decision-making during hospitalizations or changing health needs. The presentation also addresses hospice and bereavement support with sensitivity and emphasizes that each family’s care goals, priorities, and choices should guide the plan of care. Conference recordings are provided for educational purposes and do not replace individualized medical advice from your healthcare team.