resilience, caring, expectations, pain, live intentionally, environment, well-being

Newly Diagnosed: You Are Not Alone on Your Journey

Whether you are a patient or a caregiver, it’s important to remember that you are not alone on this journey with familial amyloid polyneuropathy (FAP) and that others have been in your shoes. Here’s a collection of some of our columnists’ words that they would like to share to help guide, inspire, and encourage you.

How Neuropathy Patients Can Cope With a Diagnosis

After an official FAP diagnosis, patients may be concerned with the impact this may have on their daily life and mental health. Columnist Ezekiel Lim explains how neuropathy patients and their caregivers can work together to cope with a neurodegenerative disease diagnosis.

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The Difference Between Being a Caregiver and Being Caring

Columnist Jaime Christmas’ husband, Aubrey, was diagnosed with FAP in October 2013. She recalls feeling numb after the news, and in caring for Aubrey, she has learned some difficult lessons, including what it means to be a caregiver.

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Create an Environment Where You Can Live Well With Rare Disease

Jaime and her husband have faced some tough challenges since his diagnosis, but she realizes that these experiences have helped to shape them. Here she shares some advice for caregivers who may be facing these same challenges and fears.

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Navigating the Turbulent Feelings of Caregiving

As patients cope with a FAP diagnosis, significant life changes await caregivers as well. Caregivers must address changes with a process that incorporates the five stages of grief, writes Ezekiel.

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