Christine Chiti, a specialist nurse at the National Amyloidosis Centre, explains how caregivers can demonstrate solidarity with patients in their loneliness.
Transcript
The advice I would give to my patients is for the patient to understand the disease presentation, and for them to be able to educate their caregivers who are their support system.
Once they have a clear understanding of how the disease presents itself and what to look for, the patient will be managed properly.
Mind you, this is a rare condition and half the time patient journey is very lonely before they get to a diagnosis. Even post-diagnosis, they can still feel very lonely.
But it’s more beneficial if the family understands the disease presentation and the caregivers also know how to manage their symptoms a patient will present with when they turn up in their waiting lounge.
