Opinion|Videos|February 25, 2025
Living With PNH: Long-Term Management and Caregiver Support
Author(s)David Dingli, MD, PhD, Brandi Lewis
Panelists discuss how they maintain treatment adherence through digital health apps, calendar reminders, and symptom journals while working closely with their care teams to address uncertainties and make informed decisions about therapy adjustments, with crucial support from caregivers who help track appointments and provide emotional encouragement throughout their chronic care journey.
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Episodes in this series
Video content above is prompted by the following:
- How do you stay organized with your treatments, appointments, and symptom tracking?
- Have there been times when you felt uncertain about your care plan, and how did your team address that?
- How do you help patients adjust to the idea of paroxysmal nocturnal hemoglobinuria (PNH) as a chronic condition requiring lifelong management?
- What signs indicate that a therapy change may be needed, and how do you guide patients through that transition?
- What role do caregivers play in the patient’s care journey, and what advice would you give to other patients about involving loved ones in their care?
- How do you help patients stay hopeful when treatment adjustments are necessary or when challenges arise?
This program was made possible with support from Novartis Pharmaceuticals.
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