Finding Your “New Normal” After an NPC Diagnosis
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Receiving a diagnosis of Niemann-Pick disease type C (NPC) brings a roller coaster of emotions—grief, anxiety, fear, and sometimes even relief at finally having an answer. Whatever you are feeling is valid. But finally having that answer is a huge milestone, as it is the first step toward moving forward.
Never give up hope
It is still possible to find your "new normal" and live meaningfully. Acknowledge the emotions that come with this new reality and allow you and your loved ones the space to process them. Seeking therapy can be a powerful source of support.
Remember that NPC can affect your friends and the entire family:
For caregivers: It is okay to admit to feeling overwhelmed. Resources for managing stress and finding support are available through organizations like the National Neimann-Pick Foundation (NNPDF) and the National Organization for Rare Disorders (NORD).
For siblings: They may also go through a range of emotions. It's important to check in on them, set up one-on-one time with them, and share encouragement. Hearing from other siblings who have been on this journey can help.
Read about Christopher Sousa’s experience or learn more from Serina Heinze’s perspective.
Practical tips for every day
Create your circle of support
Connect with the NPC community: Hearing how other families cope can be comforting and helpful. Find support groups and online forums through organizations that support people with NPC.
Educate friends and family: Help those around you understand the realities of NPC to build a stronger support network. Explore our article for tips on how to share NPC information and create your own support network.
Build a strong care team: A knowledgeable medical team will give you confidence that you’re getting the best care and understanding all your options. Our article offers ways to create your care team.
Advocate for your needs: Do not be afraid to ask questions or ask for help when you need it. You are the most important member of your care team.
Explore financial assistance: Many organizations offer financial assistance programs for costs related to care, assistive devices, and travel.
Make keeping track of symptoms part of your routine
NPC affects everyone differently, and there is no single NPC experience. Symptoms vary from person to person and can change over time. Keeping a daily journal of these changes can help your doctor decide if your treatment plan is right for you.
To monitor the disease, your doctor may use the NPC Clinical Severity Scale (NPCCSS). This system assesses key areas like walking, swallowing, and speech, and your notes provide important information for these evaluations.
Considering what to do next?
