How to Find the Right Care Team for You
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An NPC diagnosis is not just a medical condition. It’s a call to action.
A diagnosis of Niemann-Pick disease type C (NPC) can be overwhelming, leaving the path forward feeling uncertain. But this diagnosis is also a call to action—and the most powerful first step is building your dedicated care team.
NPC is a complex disease affecting many parts of the body, so care requires more than a single doctor. A multidisciplinary team of specialists is essential for comprehensive symptom management and care. As the person with NPC or their caregiver, you are the captain of this team, ensuring information flows between all specialists. Staying organized with notes, questions, and shared medical records is key to leading your team effectively.
Not everyone needs every specialist, and some may join your team only if needs present themselves.
Potential specialists of your NPC care team
| Specialists: How they help |
| Neurologist Manages primary neurological symptoms like clumsiness, seizures, and cognitive changes. |
| Pulmonologist Monitors and manages breathing and lung health, especially related to swallowing difficulties. |
| Gastroenterologist Hepatologist Manages liver/spleen enlargement, jaundice, and other digestive or feeding issues. |
| Speech-Language Pathologist (SLP) Crucial for managing swallowing and speech difficulties. |
| Physical Therapist (PT) Helps with mobility, balance, strength, and fall prevention. |
| Occupational Therapist (OT) Adapts daily living activities (dressing, eating) and recommends assistive devices. |
| Social Worker/Case Manager Your guide to navigating insurance, community resources, school support, and benefits. |
| Developmental Pediatrician Addresses developmental delays in children and plans for early intervention. |
| Psychiatrist/Psychologist Supports the significant emotional and psychiatric strain of NPC for patients and caregivers. |
| Palliative Care Specialist Improves quality of life by managing complex symptoms at any stage of the illness. |
Building your team: Where to start
You don't have to build this team alone. A network of support is ready to help.
