What is Prion Disease?
Prion disease, also known as transmissible spongiform encephalopathy, is a rare and fatal neurodegenerative disorder caused by misfolded proteins called prions.
The prions reproduce by converting other proteins into their own misfolded form, which builds up in the body leading to progressive damage to the brain and nervous system. The most common forms of prion diseases are Creutzfeldt-Jakob Disease (CJD) and variant CJD (vCJD). Other less common forms include Gerstmann-Sträussler-Scheinker syndrome (GSS), Fatal Familial Insomnia (FFI), Kuru, and Variant Fatal Insomnia (VFI).
Kinsa Care Approach to Prion Diseases:
At Kinsa Care we provide complex care services tailored to meet the needs of individuals with Prion Diseases. We take a holistic approach to ensure that patients’ physical, emotional and social needs are met on an individual basis.
Our care plans encompass physical therapy including exercise programs designed specifically for individuals with mobility impairments due to prion diseases; psychological support through counselling sessions; nutritional management tailored to address weight loss associated with Prion diseases; support for caregivers through respite services; education about the patient’s condition so that family members are aware of what to expect from the disease course; access to treatments such as pharmaceuticals that can help alleviate symptoms related to the disease process; spiritual support provided by chaplains when requested; and social activities arranged in community settings that promote quality of life for both patient and caregiver.
Our goal is not only to provide compassionate care but also to support our patients in living their fullest lives despite the challenges posed by this debilitating condition.
